Caregiving for Loved Ones with Mental Illness
I am sharing this video with much fear and trepidation. First, know that it is from 2020 when Jeremiah was 18. He is 21 now. I won’t share videos from when he was younger and the hallucinations and delusions first began because those were much more vulnerable times for him. I have videos documenting him crying and screaming at the voices tormenting him back then, but they conjure up many emotions and I know that Jeremiah, while he could not help what was happening to him at the time, might be embarrassed as an adult now to have those videos out there for everyone to see.
Why do I have ANY videos like these? Pre-diagnosis of the schizophrenia, Jerry’s psychiatrist informed us that six months of observations were necessary before such a diagnosis could be made. Once it was, there were about two years of medication trials and errors while we searched for the one most successful at stopping the hallucinations and delusions. The doctor asked me to record episodes for him to review at our bi-weekly appointments so he could see firsthand what was going on.
May is Mental Health Awareness Month. Caregiving is HARD…no matter what the diagnosis of the loved one you are caregiving for. It is physically, mentally, and emotionally exhausting, whether their diagnosis is a physical one or a mental one. That being said, mental health caregiving presents a unique set of challenges that only those of us who experience it firsthand can really understand.
Jeremiah was four-year-old when he was diagnosed with autism. The following few years brought additional diagnoses of frontal lobe dysfunction and dyspraxia. He also suffered from rolandic epilepsy from the time he was nine until he was about fifteen. Jeremiah was 16 when the voices first started. There is a history of schizophrenia in my husband’s family, so while we were not completely shocked at the prospect, we were not entirely sure that it was what we were dealing with. The episodes started after a trial of medical marijuana for behavior and mood issues related to puberty. He was also refusing to eat during this time and that behavior resulted in a temporary medical condition that culminated into G.I. tube feedings for about eight months. The doctor thought the medical marijuana, while helping his behavior and mood, would have the added benefit of increasing his appetite. At 16 and 60 pounds, we agreed.
So when the hallucinations began, we thought them to be a side effect of the medical marijuana and immediately stopped it. We quickly realized the medication was not the culprit behind the voices though. For the six months following, we watched him cycle in and out of 1 1/2 to 2 week episodes of a catatonic-like state where the only people he talked to were the ones we could not see. “Jack” was the main character in his delusions. Sometimes Jack told Jerry jokes and made him laugh. Sometimes he scared him, told him to hurt himself or others, and made him cry. He saw him as clearly as we see any other human we come into contact with. For Jerry, Jack was very real.
Jerry also heard what he said was “gunshots” doing this time. Once when we were out to eat at Chick-fil-A, he dove under our table and we had to carry him to the car screaming because “they’re shooting at me!” Everyone was out to get him, including our poor, sweet, unsuspecting neighbors who would wave at and greet him when they saw him outside. Pictures of people, fictional or real also had to be removed from his room because their eyes followed him and scared him. Marvel’s Loki and Slappy from Goosebumps were real culprits of this.
During these episodes, he could go a full 72 hours without sleep, wide-eyed and panic-stricken. We however, could not. We either took shifts to keep an eye on him or made sure all kitchen utensils he could use to hurt himself or us were secured and the alarm that told us the front door had been opened was activated. Jack had habit of telling Jerry to go outside and wander aimlessly at all hours of the day and night. His brother and sister also had to lock their bedroom doors because Jack liked to tell Jerry to go into their rooms at all hours of the day and night as well. Poor Benjamin shared a room with Jerry during this time. I am still not sure how he made it through.
It didn’t matter if he was here at home or in school. When the episodes were happening, we and his teachers witnessed the same things.
Then, almost as quickly as it had started, Jack would disappear and we would have our Jerry back, usually for at least a good week or two. The worst part is he would lose that time he was in the delusions. During one such cycle, my mother-in-law passed. Jerry came out of that week or so long cycle the day of her funeral. He woke up that morning chatting with us and seemingly back after a few weeks of hallucinations and delusions. We got him ready and got in the car with him and his brothers and sister and headed to the church for mom’s service. He asked where we were going and when we told him, he just burst into tears. My girlfriend Kim sat with and consoled him at the funeral. For him, grandma had just died that day because he had been too consumed with the hallucinations and delusions when she actually passed that the reality of it had escaped him. It was very sad.
Fast forward to 21 and Jerry is doing fantastic. Puberty is past, though the memories of it will likely linger for years to come, especially for us as his immediate family members. He seems to have stopped growing physically for the most part as well and so his medication management has been so much easier for his doctors. In fact, he has been doing so well this past year that his psychiatrist has begun to reduce and even eliminate some of the medications we once depended on to manage his aggression and outbursts. He is also now only on one antipsychotic for the hallucinations and delusions. The two it once took to keep them at bay gave him such a blunt affect and stripped him of his once bubbly and talkative personality. He was like a walking zombie some days. Now he is laughing again and talking to people and enjoying his Monster Jam and Tampa Bay Rays. It does this momma’s heart good.
Mental health is hard. To meet Jerry, you would not know of the struggles he has mentally. With the decrease in medication, he has had a few instances where he tells me something he hears and I confirm that it is not real and only he hears it. He accepts this and moves on and, so far, we have not had to reintroduce any medications or adjust amounts of what he is still on. We seem to be able to control it with conversation and reasoning mixed in with the medications instead. I am sure his age and maturity level now have something to do with that as well. His counselors and therapists work with us to monitor it all very closely.
All that to say…just because the caregiver you see pushing her husband or his child in a wheelchair is the obvious one, it does not mean that there are not others walking the aisles of Target or sitting in waiting rooms or pushing their kids on swings at parks who are not just as much caregivers. Mental illness is as prevalent as physical disabilities. Caregivers are caregivers and their job is 24/7, sacrificial, and sometimes thankless.
It’s why Well-Seen exists. We do not discriminate between the caregivers we serve. We understand that they come in all shapes and sizes, varying ages, can be men and women…and those they care for and their reasons for needing care vary just as greatly.