Hard Season
degenerative - adjective - of or tending to decline; of a disease or symptom characterized by progressive, often irreversible deterioration, and loss of function
This was the word Jeremiah’s psychiatrist used to describe his condition when we last saw her. Degenerative. De… Depressed, defeated, deflated, debilitated, dejected - all the things I felt all at once when she said it. What followed was her explanation for why she could no longer be his pychiatrist. “He is too complex a case at this point and I no longer feel confident in my ability to treat him.” So…add to that list REjected. I maintained my composure until the telehalth call ended and then the tears just flowed.
Sarah is Jerry’s 3rd psychiatrist and, on August 25th of this year, we celebrated our 2-year anniversary with her. She has been super conservative with medication, which we loved and appreciated. Jerry had his best two years ever behaviorally and developmentally under her care. And care she did. She even gave us her personal cell phone number so we could reach her after hours and on weekends if we needed her. Godsend.
And now we start over. Finding Sarah is still fresh in my mind. I had a LIST of psychiatrists to go through before we found her. I remember sitting at my friend Kim’s dining room table calling them all, just to hear excuses for why they could not treat him. “I’m sorry, we don’t accept Medicaid.” - “We don’t see people on the spectrum.” - “Oh…we don’t treat people with schizophrenia.” And then Sarah. It was actually one of the psychiatrists who turned us down who recommended her.
We are in one of the most difficult caregiving seasons of our lives with Jerry. As is the case with most mental health conditions and their treatments, medications often cease to work after a few years because the body/mind just grows immune to its effects anymore - for lack of a better explanation. Anyway, that has been the case with Jeremiah and it started just a bit before Christmas last year. We chalked it up to excitement and anxiety over his favorite holiday approaching, but when January rolled around and we were still seeing symptoms, we knew something was going on. Fast forward to February and by now we were approaching crisis mode.
Hence the tweaking began. Because Jerry is so sensitive to medication changes, Sarah made changes in infinitesimal increments - .25 mg. changes. Seriously. When it was evident that the medications were simply not working at all anymore, she changed antipsychotics altogether. Still, we were seeing a worsening of his symptoms. Unfortunately, as things took a turn for the worse as we approached summer, she had to help us make the very difficult decision to Baker Act Jeremiah. He spent 5 days in a behavioral health facility where he could be supervised while they weaned him off all of his meds that were clearly no longer working and began a new protocol.
It was the longest five days ever. The last time he had been away from us for that long was when he stayed with my girlfriend Lynn for a week while we led a youth mission trip to Cherokee, NC. We missed him so much we said we would either find a way for him to go the next time or we would not lead the next trip. We ended up paying Lynn’s way to go on the next year’s trip so she could be his caregiver and he could still be with us while we led the group.
This was different. He was in an unfamiliar place with people he did not know. And because he is an adult now, even though developmentally he is probably closer to 14-15, adult facilities are our only option. Some patients screamed in the middle of the night or threw up in trash cans next to him as they detoxed from drugs. He had an adult male roommate we did not know. Because they were an adult facility, there was nothing for Jeremiah to do each day. They had one television they kept tuned into a new channel (the worst thing for someone with paranoia) and a library of adult chapter books and word searches. Jerry doesn’t read. We finally got permission from the doctor to take him coloring books and comic books…once they truly realized how developmentally and intellectually delayed he was. The worst part? We could only see him one hour a day from 2-3 pm. And he was ANGRY. One day, he would be happy for our visit and excited to see us, sad to see us go. The next he would be angry at us for leaving him there and scream that he wanted to go home. One day he told us he didn’t want to visit with us and we left only ten minutes into our visit. Heartbreaking.
I would love to say that they found the perfect medication combination before releasing him to come home on day 5 and that he is doing great again, but then we would not be on the hunt for a new psychiatrist if that was the case now would we?
It’s been a long, hard season. We have been here before, but when he was much younger, much smaller, much more manageable. Those seasons ended and we pray this one will too, but the word degenerative does not give me the hope I so desperately want and need when I think about his future. In fact, it gives me the opposite - hopelessness.
And if I am being entirely transparent and honest, it makes me angry. I am angry for him. I am angry for our family. I am angry for his future, his degenerative future. I am angry when I think of the last 22 years of therapies - metronome therapy, therapeutic listening, deep pressure therapy, anxiety trials, numerous medications, ABA therapy, special diets…not to mention all the money spent on sensory items and activities, programs, scholarship monies for private schools, etc… If he is just going to go downhill, get worse, decline, degenerate, what was it all for? Was it just to make our lives better in the moment, give him a better quality of life in that season? If so, was it worth it? Would I do it all again if I knew that someday it wouldn’t matter? I have no answers. Again, I am just being honest.
But God. That’s all I’ve got. Is that enough? Some days. Others, I wallow. Has there been grace along the way? Absolutely. Of that I am sure. I record the evidence in my thankful journal at the end of every day…even on the days when all I have to be thankful for is Jeremiah’s bad aim when he threw something at me in a fit of rage (only to tell me he loves me three minutes later - The whiplash is real folks.). 9,521…that is the number of entries in my grateful journal right at this moment. 9,521 testimonies of grace, without which I cannot even imagine the despair, especially considering how I feel right now.
Part of that grace is the 108 family members we have served so far this year. We have provided $7,249.12 in meals and support to family caregivers this year - caregivers who know the same sadness and anger that I do…brothers and sisters every one of them. The hugs I have given them upon delivering their meals/gifts I have given knowing I needed their hugs back just as much. These precious people remind me that I am not alone. My purpose and mission with Well-Seen has been to let family caregivers know they are seen, heard, and loved. And now our caregivers are returning the sentiment one application, one testimony of endurance, one hug at a time. If that’s not grace, than I don’t know what is.
Prayers appreciated.