Remembering Trevor: Heartfelt reminder that getting quality mental health treatment (and disability) should not be this hard!
Trevor Bartholomew passed away on January 21, 2017…his Mom, Stephanie Bartholomew, has given permission for this to be shared in hopes it may help others. Jeanne Nelson, NAMI El Dorado County, 30- Sep-2018. The Bartholomew’s co-sponsored (with FKCE) our 2018 NAMI Family-to-Family class in South Lake Tahoe:
Here is a pdf of this story for those that wish to reprint
—–Original Message—– From: Aubrey Sent: Thursday, March 19, 2015 11:24 AM To:
Subject: Letter to give PHF
Hi Stephanie and Mark,
I have attached below the letter you asked for, that was originally faxed to Trevor’s lawyer for his social security application. I made a few minor adjustments. I wanted to direct it to the PHF and make it more relevant for his evaluation there, versus being geared toward a request for disability assistance, though that is still a central theme through much of it. My parents are already asleep but if need be I can get them to forward the letter they wrote as well, once they’re up in the morning.
I felt the need to give a brutally honest and detailed description in my letter, so I still don’t think it wise for Trevor to read it. It’s all truths with which he is more than familiar, but just remembering it all to write it all down was distressing to me. I’d rather he didn’t go through similar distress, unless of course his psychiatrist thinks it necessary to convince him of the severity of the situation. At this point he has promised me to stay checked in as long as they will let him. However I don’t know how long that is at that particular facility, and we all know how quickly he can change his mind.
I will be praying for him, you, and myself, and crossing my fingers that he sticks with it and can find the right help. Good luck tomorrow. Hope everyone is holding it together and that he will be ok.
Love and miss you all, Aubrey
March 18, 2015
To Whom It May Concern:
Having taken Trevor under my wing for over a year now and known him since high school, I would like to add my observations for your consideration. His situation has greatly increased in severity in recent years. It is tragic that his diagnosis and treatment have been delayed so long, and applications for social security benefits have been denied, leaving him to continue to get worse, drifting in and out of homelessness. His disability is great enough that he has not only lost his independence, failed to maintain a driver’s license, and destroyed most of his relationships, but also that his care overburdens those who wish to help him. I would like to clarify what he is going through so the best decisions can be made for his care.
Trevor is suffering from severe bipolar episodes. His bipolar symptoms are by far the most significant of his issues and make it impossible for him to support himself, or even for loved ones to financially support him while also taking care of his needs and attempting to cope and maintain livable conditions for the rest of their family. His other health issues are even more unfortunate than they would be otherwise, in that they trigger his bipolar symptoms. Once mental health and medical professionals have worked with him long enough to become familiar with his situation, they concur that his chronic back pain is exacerbated by his bipolar problems and likewise the pain causes increased bipolar episodes. This cycle occurs even when his inflammatory digestive system problems are in remission. Some of the specific observations I have made this year have been:
Trevor experiences rapid cycling between severe mania and depression which sometimes occur in the same day. He also experiences sleep disturbances, fatigue, confusion, anger, paranoia, and varying levels of focus and cognitive function. He can lose all self control and regress to uninhibited, impulsive, erratic behavior and childish tantrums. This is quite problematic when paired with an adult man’s strength and weight.
Often, Trevor can’t sleep without medication, but the medicated sleep causes him to maintain a single position through the night. He doesn’t turn over as one would naturally, and the extended single position aggravates an old back injury. It causes him extreme back pain in the mornings. This triggers further bipolar symptoms, resulting in further sleep problems and high levels of stress, which in turn worsens his back problems. When this has gone on long enough without respite, the stress causes ulcerative colitis flare ups. This causes Trevor to have difficulty digesting food, and he suffers from nausea, loses weight, and finds blood in his feces and vomit. Trevor must constantly visit the ER, either for nausea and dehydration, muscle spasms in his back, or because he is suicidal and/or destructive and needs to be checked in to an emergency inpatient mental health facility. The ER employees in his small home town are understandably burnt out from dealing with his uncontrollable, frustrating behavior, but often mistreat him under the mistaken assumption that he has more self control than should be expected of him, or that he’s simply on drugs. They have often maliciously refused him services, even calling the police and having him thrown in jail instead of constructively following protocol established by the local mental health department. In the throes of an extreme bipolar episode/mood swing accompanied by pain and confusion, it’s hard for Trevor to understand that he can’t trust his own emotions or understanding of reality. He becomes very paranoid and delusional.
He claims that he does not hear voices or hallucinate, yet becomes aggravated about very bizarre interpretations of conversations and events, believing things to have been said or done that were obviously not the case to everyone else present. His personality completely changes, as if he were possessed by someone with completely different opinions, perceptions, and values. He vents his pain on others, resorting to projection, false accusations, and abusive behavior. He loses all sense of boundaries, for himself or others. He follows people from room to room harassing them, ranting about irrelevant issues, calling them cruel names, purposely not allowing others in the household to get any sleep. Depending on the severity of the episode, he may break loved one’s belongings, spit in their face, punch through doors when they try to sequester themselves in another room, sabotage their attempts to leave the premises, take their cars without a license or permission and drive recklessly
enough to endanger himself and others, make outrageous threats, threaten to kill himself, or even attempt to do so. During this last attempt, he called to tell me goodbye, refused to tell me where he was, and screamed at me for supposedly not caring, before even giving me a chance to respond. Blamed it on me, referencing another of his delusional memories of ways he imagines I’ve wronged him. Then demanded to know what my last words to him would be, after creating that sort of emotional setting. Clearly he is in desperate need of serious help in order to have any chance at a functional, happy, healthy life.
During calm moments after an episode he is often unaware of the full extent of his behavior and shows signs of impaired or selective memory. His actions and their resulting consequences must be explained to him, causing him extreme remorse and embarrassment. Sometimes he is bedridden by anxiety for days. He will promise to agree to check into an inpatient facility, but refuses once he is again caught up in an episode.
Trevor’s true nature when he’s well is very sweet and conscientious. This makes it even more tragic. It causes him grief to realize that he has caused distress to people he cares about. He often isolates himself while compulsively engaging in an avoidance behavior from which he cannot break free, making it impossible for him to stick to a schedule, keep commitments, or honor his own priorities no matter how important they are to him. Other times he cries until the distress is too much for him, sending him right back into the manic state he just recovered from. He can go for stretches of minutes, days, weeks, and sometimes even months of being himself, and the next week destroy everything for himself and those around him. This makes it easy to misjudge the situation when first becoming acquainted with him. I originally met him in high school. He was very social with lots of potential and no sign of mental illness. He was handsome, energetic, creative, passionate, and athletic; flashes of that return in between episodes, making it appear in that moment as though he should be perfectly capable and independent. This has led to delays in diagnosis and treatment in both medical and mental health care, as well as major confusion for his family in terms of expectations and what direction to take with their help and advice. For example, an essential hip surgery was delayed for years while wondering if he was just a hypochondriac. It can be difficult to tell if some of his physical issues may by psychosomatic. Meanwhile he had hip bones grinding together paired with bulging disks in his back. It caused excruciating long-term pain, significantly unraveling his sanity over time, impeding his range of movement and active lifestyle, and leading to dependence on a pain specialist.
It’s hard not to waver back and forth in your resolve of how to respond to Trevor because his state is in such constant flux. His parents wavered for years between encouraging him to apply for assistance versus hoping this was just a behavioral problem and perhaps he just needed to get his act together and could rejoin the work force. However, Trevor has been hired, excelled temporarily, and inevitably lost his position at every job imaginable because he is unable to function due to mental disability. He wavers in his opinion of whether or not to make further attempts, and I worry if he can handle the emotional impact of any more negative outcomes. He’s very affected by his inability to support himself, much less a family, but without drastic improvement in his condition, he will at best only be able to try for a part-time job, to avoid the financial ramifications of constant changes and gaps in insurance coverage if he loses his assistance. I believe he should also be given official disability status so as to allow his MediCal assistance to offer continuous coverage without constantly reapplying and filling out status update forms, which he is incapable of doing on his own.
He applied multiple times for help from the Department of Rehabilitation’s local resource center, where those with disabilities are helped to find whatever part-time work they can handle, or granted funds to start their own business, in the hopes of customizing a schedule and/or workplace to work around their problems. They determined that while he obviously qualifies for disability status, he was in no condition to reliably fill even a part-time position or be entrusted with grant money. They encouraged him to continue seeking treatment but closed his file, twice. They have currently re-opened it a third time, and at their last meeting felt optimistic about placing him in a position somewhere. He is also attempting to find volunteer work. I think even a very small commitment and involvement in his community would do much for his self- esteem, but that the idea is both exciting and distressing to him. He cited his concerns over keeping a job and making me and his family happy, during his phone call to me this last time he attempted suicide. He also desperately needs disability
status so that those who care about him can properly help him. From experience, I know that trusting him to stick to a treatment plan is pure folly, regardless of his resolve and competency at any particular moment. Even trusting him to manage his meds alone, and assess how they work, is not a feasible option. Neither is counting on those living with him to exist without sleep and have no right to a say in the matter. It hasn’t worked for his parents, or for me, or for my parents, or for other friends who have taken him in. He often refuses to even let us attend his doctors’ appointments, and we have no right to force our way into them so as to accurately report how a medication is affecting him.
For example, Trevor has been prescribed Seroquel, a sleep aid that doubles as a mood stabilizer. It obviously makes sense that his doctor would suggest he try it, and it’s the only thing working lately to get him to fall asleep. However, it also exacerbates his mania instead of helping it, and the last month he was with me, it set off a manic fit every night before eventually overpowering him and knocking him out. He fights the doziness, shrieks, growls like a wild animal, falls asleep on the toilet, sleep walks. He experiences overwhelming hunger and breaks things trying to get to the kitchen and bring his food to bed with him. He smears it on his sheets, repeatedly breaks dishware all over the floor, and accidentally breaks light fixtures so caretakers coming in to help him must unknowingly tread through glass trying to get a light turned on. It has become a full-time job just keeping the house sanitary and safe. The doctor encouraged pushing through what might be temporary side effects, but they persisted. She upped the dose, hoping that would help, but it hasn’t. His goals in visiting the doctor are often confused and appointments are wasted. He refused to let me attend his last several psychiatrist appointments, so I was unable to discuss this with her and help find an alternative medicine. Even without such delays, the process of finding the proper medication for a bipolar individual is a long and difficult one, as they respond to meds strangely and are all a little different.
Then there’s the fact that he frequently changes his mind and refuses to take his medication. Or he forgets to take it, misplaces it in the reach of children, loses it and tears the house apart searching for it, or takes too much, either in desperate attempts at relief from pain and excruciating manic depressive states, or even repeated full- on suicide attempts and cries for help. He affects his ability to get care by giving the emergency room the impression that he is simply an addict seeking drugs, because of his inability to manage them himself. I eventually realized he even needs help monitoring his food intake, because he forgets or refuses to eat so often and experiences such dire consequences when his blood sugar levels get out of balance. Regularity and balance in not only his medication but also his diet, exercise, and sleep are significantly more important than they would be for anyone else, but much harder for him to maintain.
Trevor’s primary care physician recently requested that I help monitor his anxiety and ADHD meds, and did not even feel comfortable writing further prescriptions for them unless I agreed to do so. At the time Trevor also agreed to this plan, but later resented any “control” being exerted over him, picked the refill up at the pharmacy himself, and hid them from me. And as expected continued to fail at managing them on his own, attempting yet another overdose and the very next day claiming he would call the cops on me when I found and hid the remainder from him. He has actually called the police on me many times in a manic state, claiming I am the abusive one and trying to get me arrested to punish me for following through with arrangements agreed upon earlier. It concerns me that there needs to be documentation of his condition and the role of his caregiver, for the authorities to refer to in such situations. I asked why they can’t write his prescriptions to be picked up by a caretaker, or mark them as being allowed only under the care of someone he trusts. Apparently, that can be done but only if he has official disability status.
Another option I recently learned of may not apply to him, but I feel is worth mentioning in case it does. A family friend’s son who has been diagnosed as bipolar and schizophrenic also used to take Seroquel, which somewhat helped him but had adverse side effects. Like Trevor he also had major difficulties taking it consistently at regular intervals and doses as prescribed, so his psychiatrist switched him to a medication administered in the form of a shot, which lasts for weeks and has been far more successful. He has been stable ever since, without having to worry about remembering to take any pills, just to make it to his appointments every few weeks. I don’t know if Trevor’s diagnosis has been dialed in enough to know if the same shot would
work for him, or even what the med was called, but if the proper medication for Trevor could be administered in this fashion, it would solve a world of problems.
He most likely needs to be checked into a long-term facility that can help sort out the medication problem and monitor the effect of different combinations until he can hopefully be stabilized, or at least reach as stabilized a state as modern medicine can accomplish for him. I’m not sure if the PHF can keep him long enough to accomplish that, but if so I know it is a location he is comfortable and familiar with, causing him much less anxiety than other suggested locations. If not Trevor’s family could use some recommendations of facilities that specialize in his particular psychological issues, versus a standard drug rehab center, or even any combination of the two that would completely deprive him of pain management or make him feel trapped or aggravated in ways that might trigger his issues and impede recovery. Researching online I’ve found certain places such as the Austen Riggs Center that seem like they might be of help but out of the range of affordability.
However, as an adult American citizen he has the right to refuse to check in or to stay. Until recently he has always either exercised this right, or temporarily recovered his calm long enough during an evaluation to be turned away and checked out too soon, or not even initially admitted access to the care he so desperately needs. For now he has promised to stay at the PHF as long as he is allowed and do whatever it takes to stabilize. I hope he keeps his promise and can recover.
Those who have tried to care for him (family members and close friends) end up burning out on the effort, which requires a huge commitment of time, energy, and resources. Each time, he burns bridges and ends up back on the streets until someone else steps up to the plate, and the process starts again from the beginning.
I hope that this time around he can either stay at the PHF much longer than the 48 hour minimum he’s done before, or be referred to the appropriate facility. We would also greatly appreciate any help you can give in his attempt to be granted disability status, so he can receive some additional assistance in meeting the basic needs of his care, and his family members can put their full attention to getting him the treatment that he needs. A letter of recommendation or release of his most recent records might help him to make another appeal to social security. Obviously though my main concern is that he gets the proper treatment as soon as possible. Please help that to happen. Thank you for your time and consideration. If there’s anything else I can do to help, please let me know. I can most easily be reached either at (801)494-0119, or my cell (671)864-8864, or by emailing a……….@yahoo.com.
from TahoeDailyTribune 24-Sep-2017:
TREVOR JAMES BARTHOLOMEW
Trevor James Bartholomew passed away on January 21, 2017.
He grew up in Stateline, Nevada, graduating from Whittell High School in 2000, where he played soccer, was a member of the ski team, and was loved by his classmates. His sense of humor and ability to make others laugh was unlike any other. Oh, that laugh…so contagious. Whether he was hiking, backpacking, rock climbing Lovers Leap or racing down the ski hill at Heavenly, he loved and longed to be in the great outdoors.
As Trevor aged, he bravely endured life’s physical and mental challenges. He care so deeply about our world. There was a frustration, hope and an intense drive to make positive changes.
Trevor is no longer with us, but perhaps we can take a bit of his spirit with us and try to make our world a better place, in his name.
He is survived by his parents, Mark and Stephanie, his incredibly loved younger brother Chase, grandparents, aunts, uncles, cousins and many friends.
A Celebration of Life is scheduled for 12 pm on January 28th at Sierra Community Church, 1165 Sierra Blvd., South Lake Tahoe, CA 96150.
In lieu of flowers donations may be made to NAMI El Dorado County, P.O. Box 393, El Dorado, CA 95623 or Warm Room, P.O. Box 13514, South Lake Tahoe, CA 96151.
Trevor’s Mom, Stephanie, wrote this: Trevor celebration life She stoically read this in his honor at the celebration of her son’s life: