We’ve had a rough few months and I’m trying to stay hopeful.
My son was sort of stable for a few years but for the last couple of years things have been getting worse. He was diagnosed with Paranoid Schizophrenia in Nov of 2008. After a couple of initial hospitalizations he was living independently close by until summer of 2022. Hes had some runs in with the law for vandalism related to his disease he spray painted hate speech anti immigrant things on a house.
His housing situation got steadily worse due to his unwillingness to tell the landlord about a broken toilet ,windows and roof. Last Spring in late April my wife had to do an IVC as his behavior became more erratic and threatening things seemed maybe a little better after this discharge but who knows. We were fortunate to be able to get him new housing in a nearby town. We moved him into a 1100 square foot house in an ok neighborhood. Unfortunately his illness/alcohol/drug comorbidity got worse.
He had been under the care of a local ACT team for years but the transition to the new location/jurisdiction didn’t go well. Not sure how much that mattered though as the ACT team care at this point was basically centered around him getting Adderall which has been a big issue . The Dr basically told us that they were still giving it to him as a carrot to stay in the program which I suppose is a valid technique but he wasn’t taking it as prescribed (he’d get two days at a time) and wasn’t taking the anti psychotic meds from what I could tell. You could pretty much plan on abuse/erratic behavior about two hours after the act team visit. Its also a constant need for more and more money although all we have is his ssi.
In early Sept of 2022 his grandmother died pretty suddenly of Covid. This stressor really accelerated his de compensation. As his rep payee I was getting most of the verbal and emotional abuse. As things escalated I had to do an IVC. He was hospitalized for about two weeks but no real good followup happened partly due to his actions but also because we were so busy with funeral and settling the affairs of his grandmother. We couldn’t have him as part of the memorial services as his erratic and reckless behavior (destroying property, death threats, verbal abuse , alcoholism) was off the charts.
After his discharge they had him on respiridone and depacote and a new diagnosis of Schizoaffective .
We did get him to one follow up appointment and the Psych doc told us the level of care he needed exceeded what the clinic offered. We think he went through a months supply in two weeks and was really manic its pretty crazy as who abuses respiridone?
Things got worse from there and resulted in another IVC this time after another approx two weeks he was discharged on a Tuesday and they had him on Invega sustenna injection ( which I had told Dr’s during the first hospitalization would be best). He was discharged with a months supply of Depacote again with followup care with the outpatient clinic doc.
Four days later we learned the house he was in had caught fire and he was in the hospital. Thank god he had no serious injuries but the home was considered a total loss. Toxicology screens revealed no excessive drugs or alcohol so we’re not sure exactly what happened though ER doc did tell us some street Fentanyl drugs are not detectable through screening. I assumed that he had taken a ton of Depacote but they said screening for that revealed a “therapeutic” level our son says he was rolling joints of “legal” CBD and that embers caught the very old (1960’s) and very flammable couch on fire. A couch which I had urged him we should replace but he insisted on it as it had belonged to his grandmother.
We had a renters insurance policy for him so he was in a hotel for ten days after the hospital stay after the fire after being home with us for about a week. We also manged to get another shot in him. I’m pretty surprised he wasn’t thrown out as he had a boom box that he plays lots of disturbing music on but he then moved back in with us. Both of these initial stays with us often had me in my bedroom door locked with a can of MACE close by as his threatening abusive behavior continued often accompanied by this horrible loud music and the ongoing battle to turn it down. After about a week or so of trying to maintain he was drinking again but taking meds. It was about this time that he starting taking some old diabetes medicine he found that was for his grandfather called Glyburide we can only surmise he had been taking that because the label said it can cause dizziness. After a few days of exhausting behavior things got quiet and we assumed he was asleep thank god. My wife heard some noise from his bedroom and found him in the tub unconscious going into convulsions it was absolutely terrifying. Fortunately I showed my wife the pill bottle and she quickly got me to get handfuls of sugar into his mouth. He had overdosed on this medication and was basically in a self induced diabetic coma.
By the time EMTs arrived he was conscious and not convulsing.
Once again he was transferred to the Psych ward after the hospital stay for the overdose for a few days before being discharged and is now back on oral resperidone which we sort of control and depacote he advised Dr’s he didn’t want injectable anymore.
Hes now back home with us and back to drinking but taking meds. I’m extremely stressed out with panic attacks and depression sometimes the whole situation seems hopeless. His lack of accountability is distressing. Its a constant battle between trying to be sympathetic to his illness and wanting him to be accountable for his actions he wont really admit to what happened with the overdose or acknowledge that he almost died. This has been another awful holiday season. Our home is like living on an unsupervised psych ward hoping the patient will follow the rules.
Trying to take it day by day and am going to start AL Anon meetings. It looks like it will be six months before the insurance process gets the house rebuilt. The drinking usually leads to abusive behavior with no regard to boundaries and hate speech. Its really disturbing as I’m also concerned about his level of self care. Even when the house is rebuilt can he care for himself ? After both IVC/hospitalizations I spent weeks cleaning out his home it was filthy with beer cans and cigarettes scattered about ect… Hes now 37 years old his future is a constant worry.
As my sister was Schizophrenic I have past trauma that all this continues to trigger, As a parent the only thing I was afraid of that I couldn’t protect my kids from was this illness and it happened.
Ive tried to tell him we’re in the consequences phase of his behavior but I don’t know if this message gets through. He wont really discuss it but I have to believe he thinks about whats happened to him or does he ?
I know an IVC commitment is trauma for him and myself but will he ever link his behavior to these hospitalizations does he really think I’m having him “arrested” for nothing?
I’m going to start Al Anon to help with dealing with the alcohol part of things I don’t want to enable his behaviors and need to avoid anger and name calling but am I ready/able to throw him out of the house ? The tough love idea sounds good but how do you do that to someone who is not only alcoholic but schizophrenic?
I’m sure many reading this have been through similar experiences and understand. We’ve done Family to Family NAMI classes and I have a therapist who is very helpful and Im getting ready to go back on depression anxiety med’s but I spent a lot of the holiday in my room just trying to avoid confrontations or escalations . Guess this is what they mean about your life becoming unmanageable.
Its been about 14 years now with this illness and I can tell its taking its toll on me and whats left of our family. We’ll keep going as best we can.
Best wishes to everyone else who is struggling I know its not easy.