Like a roller coaster in the dark

Family
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It has been some time since I have chimed in or provided an update, so I thought I would take a moment to write this afternoon.

I was trying to describe what it has been like to be a mother and caregiver for my 21 year old Sz son to a friend recently, and what came to mind was when I was at an amusement park a long time ago and I thought a roller coaster in the dark would be something fun. Ahhhh, no!

Somewhere between the fear of what is coming next, chaos of the unexpected and upside down spins, the unknown trajectory at great speeds, the harsh and painful corners that cause whiplash and misery when you can’t prepare for them or see them coming, and so much escalation and falling from great distances that it makes your sick to your stomach…that is what it is like. When what feels like a crisis moment is over, you exit the ride, and for me…I remained feeling quit sick to my stomach for some time. In fact, I needed to sit to recover…so much so that I missed all of the other fun life moments of that park. I told myself I would never entertain that again if I had a choice.

I wish we had a choice with Sz. I wish that my son and I could get off this ride.

I will say, since we executed the last petition to hospitalize him, gained guardianship, and now that he has been medicated for 4 months on the Invega shot…although I don’t feel as sick as I did from the ride we had, I have been a little out of commission in my life. I am still resting…or maybe it is that I am hiding? Either way, I am learning how to navigate this better as we discover what his baseline will be. I told myself that on June 1st, I was making myself turn a corner.

The medication is an imperfect science, but it has improved the quality of his life some. He still has sleep trouble, breakthrough symptoms, and his short term memory is compromised. His many negative symptoms remain. He has very poor decision making, and describes getting caught in a thought loop. He still has no awareness, and with the court order surrounding a conditional release for medication expiring, I have been creative in getting him to agree to the shot. He has had one on his own. This month’s shot he is likely to challenge. We shall see. I might think a med dosage change would help, but this is the first time he has been compliant with any kind of medication at all. We are working on autonomy in decision making…helping him stretch his independence while we hope for more improvement. Right now we are hoping the small improvements continue.

In the meantime, I am preparing myself for what will likely be an approved SSI claim and him leaving us because he will have money in his pocket. I am trying to weigh being a mother, a safe and desirable home/family to return to…or if I want to continue to fight decisions and police him with guardianship. It only makes him push harder to be away from us. He is a flight risk when he feels trapped or that someone is taking away his right to choose. He has signed HIPPA and a Medical PoA, so I am contemplating side-stepping guardianship so we can improve and maintain a relationship of trust. We still haven’t fully decided. I continue to tell myself, “I can support my son…I will not support schizophrenia,” and I try to decision make from that place.

For us…sadly, we feel we are at the lull before the storm…or better stated, on the tic-tic-tic-tug, going up the climb for an unknown fall and direction on this roller coaster in the dark. Perhaps the first time around will help me brace, react, and prepare for what now are expected turns, expected chaos…I sure hope so.

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Regarding the SSI money fears, I had the same. I was so afraid he would buy an airplane ticket or something awful like that.

But, shortly after the SSI was approved, a letter came saying something like…“Based on our review of the case, it is possible that X may be unable to manage financial decisions. Therefore, a Representative Payee may need to be assigned. Please come to SS and bring this letter”…or something like that. It was very easy to prove to the case review person that a Rep Payee was needed.

Now the SSI comes to me (in a direct deposit account) and I manage it’s use, to pay medical co-pays, cell phone, gas, recreation, car insurance, food, etc.

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That is GREAT news, @Day-by-Day. I truly hope that is the case. Thank you for sharing that.

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To clarify and add more detail,…

My son was actually in the hospital when the SSI was approved. At that time, he was very unwell, so we didn’t talk to him about the approval, as there was no point. This was fortunate because we were able to keep the money quiet and out of the picture for a number of weeks. Hopefully, you can figure out a way to keep things “quiet” until you get the letter that suggests a need for a Rep Payee. If I recall, this took over a month, but boy was I relieved when I got it. You will both need to go to SS for an appointment to “assign” yourself as the payee.

I don’t know how the SS Admin decides who “might need a Rep Payee”, but I imagine it has to do with the diagnosis and/or reports from the service providers who filled out the paperwork.

Aside from whether the person can “manage finances”, the decision to assign a Payee also was about whether the person would be able to follow through on opening and responding to SS mail, so the SSI doesn’t get cancelled. Even after approval, there are still many hoops to jump through. This is how I made my case, to both my son and the SSI case review person. As we know, executive function is a challenge for our loved ones. Hence the easy case to prove.

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A rollercoaster in the dark is the perfect analogy, but it ain’t no Disney or Universal, it’s not knowing if there’s a dip ahead, not being able to see when it’s going to happen, or just how low it’s going to go, that’s where it’s so hard.

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The rollercoaster analogy is a perfect description when you have a loved one with sz or any chronic illness. My youngest child was born with cardiac defects and some other medical issues. His first 6 years were filled with surgeries hospital stays doctor and therapy appointments…it was a true roller coaster and then it evened out for a few years until my older son developed sz…we were right back there with the extreme lows and highs. Both diagnoses took time for me to process and accept and can still weigh me down at times. Right now things are fairly smooth and I am grateful; however I am always observing to see if we are about to experience the unexpected…ot is truly exhausting. I do understand the roller coaster!

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