– the enduring struggles of caring for the mentally ill
By Vanessa Braithwaite
HOW do you describe the pain of a mother, looking at one of her son’s in a casket and another in jail cell. Unimaginable! For New York-based Guyanese mother Odessa Frith, this has been her dreadful reality.
On September 29, 2018, her oldest son, 20-year-old Shawn Smith, who was diagnosed with schizophrenia, threw her youngest son, four-year-old, Shimron Smith, off of their seven-storey 2425 Nostrand Avenue, apartment building. He died instantly. Frith, a mother of six, was sleeping at the time. Never would she have thought of waking up the most painful, agonising news, that her little Shimron received such a horrible death.
As the pain crushed her body fibres and the despair choked her, with uncontrolled tears rolling down her face, Frith had to see her mentally ill son, whisked away by the police in handcuffs. Her motherly affection overpowered any feelings of anger and hostility toward him, for she knew, he could have never meant to commit such a gruesome act on his own baby brother.
Frith waited eight months before she visited Shawn in prison. “He said mommy when I hold Shimron, he said mommy I started screaming, he said mommy, he said you come to know what happen to Shimron? I said yes, son. He said mom, I didn’t know was Shimron, he said mommy I didn’t know was Shimron, he said I think was a bag. He said mommy, I’m so sorry. I was hearing voices. I said Shawn, I forgave you, although I know it hurt me, I forgave you,” she told PIX 11 News, during an interview.
This was the climax of her battle with caring for a mentally ill child, a battle caregivers experience daily, but is often times overlooked by society. Shawn was diagnosed with schizophrenia earlier in 2018.
Schizophrenia is a long-term mental disorder involving a breakdown in the relation between thought, emotion, and behaviour, leading to faulty perception, inappropriate actions and feelings, withdrawal from reality and personal relationships into fantasy and delusion and a sense of mental fragmentation.
“On his 19th birthday, I saw the changes,” Frith related to journalist, Mary Murphy.
DOWNHILL BATTLE
Since then it was a downhill battle for her and her relatives. The very same roof Shawn threw Shimron off, a few months prior, he attempted to jump off, but his suicide attempt was thwarted by cops.
This regression was as a result of Shawn not taking his medication. In fact, he only took it for one week after being diagnosed and his family experienced grave difficulty in getting them to do so.
Physiatrist attached to the Mental Health Unit at the Linden Complex, Sandra Glasgow, related, that the most common cause of relapse in a mental condition, is the discontinuation of treatment. This is because mental health patients are often in denial of their sickness or may not even be aware that they are sick. This condition is called anosognosia. Forcing a mental health patient to take their pills, is just a fraction of the up-hill battle, faced by caregivers.
According to a 2015 study conducted by the National Institute of Health, only 50 per cent of schizophrenia patients actually followed their treatment regimen and took medication as it is prescribed to them. Another study in 2016 showed that between 10 and 60 per cent of patients did not take their medication regularly.
Frith is one in thousands of mothers of with mentally-ill children, whose struggle in caring for them, ended in death.
Tracy Bobbsemple shared a similar fate last year in Linden, when her son Allistare Bobbsemple, who was diagnosed with drug-induced psychosis, committed suicide. In sharing her story with this publication, Bobbsemple related that she had an uphill task in getting 22 year-old Bobbsemple to stay on his medication. His condition gradually worsened and he began to hallucinate and display several other behavioural patterns associated with his sickness.
NO CHOICE
She had no choice but to admit him into a psychiatric clinic to receive help in caring for him. Even after his release, Bobbsemple, who was a student nurse at the time, continued to experience relapses and spoke often of wanting to die. Tracy, however, knew she tried her best, despite caring for him was one of the greatest challenges she experienced. In tears, she related how she battled work, caring for her other children, herself and giving Allistare the love and support he needed, since there is so much stigma attached to mental illness. Even through his disapproval of some of her decisions, she mustered that motherly strength and love needed to see him through.
While Tracy may have displayed insurmountable strength to care for someone in such a severe state of mental illness, that is not always the case for many other caregivers and the frustration of dealing with their mentally-ill relatives, may affect their mental faculties as well.
This was highlighted by Marcia Yangapatty, a licensed counselling psychologist. She said the most common form of mental conditions that affect caregivers are depression, anxiety and sleeping disorders such as insomnia. The severity of these are developed due to the level of tolerance the caregiver would possess and the type of mental condition they are dealing with. Other factors include their financial situation to purchase medication, supplements and nutritious food, their support base and the cooperation level of the patient.
VULNERABLE
“The caregivers’ inability to sleep, they can’t really sleep, they are exhausted, extremely tired because they will have their personal life as well, they will have things to do for themselves and so they can develop mental health disorders as well, because of the level of tolerance. If it was just one month, fine, but the continuous every-day care can really trigger these disorders,” the psychologist explained.
According to the American Psychological Association, caregivers are at an elevated risk of developing mental health disorders and should also be screened for these conditions. In a study by the Anxiety and Depression Association of America, 40-70 per cent of caregivers show symptoms of depression with approximately a quarter of these caregivers meeting the diagnostic criteria for major depression.
This may the case of Jackqlin DeSouza, a resident of Amelia’s Ward Linden, whose 26-year-old son Jonathon has a plethora of mental and physical conditions. Jonathon spends most of his day sitting in a bus shed at Lover’s Lane Amelia’s Ward. Jackqlin has no help in caring for Jonathon. She is a single mother who lives in a one-bedroom unfinished house and does odd jobs around the community to provide for them. Jonathon was not born mentally ill, but according to Jackqlin, he developed brain damage after being physically assaulted more than once.
“We were living in Berbice and me and my husband separated; we were staying in a house and this man on my husband side just came and beat up this boy, he was four. Lash him up all in his head, break up his two hand, his nose, beat him bad. I took him to the hospital and he get back good, good. Then when he grow big, he went into the bush to look work and a day I get a call, when I go, somebody beat this boy so bad, I couldn’t even recognise him, was blood all over.” They admit him for a long time and since then, he paralyse in his two hands and he sick in his head,” she related.
Jonathon has been receiving treatment from the Mental Health Unit at the Linden Hospital Complex but according to Jackqlin, because of her financial situation, she cannot afford to take him for treatment often. In fact, she said, even if she gets a car fare, it is a difficulty to get him to the hospital because he would aggressively retaliate. Currently, he is off of treatment and she is unable to feed him properly, which too contributes to his regressing state. “I cook my poor food, whatever I can catch from my lil day work and cook and he would eat,” the visibly frustrated mother said.
HARD TO KEEP UP
While the Mental Health Unit has played its part in trying to get Jonathon the care and medication he needs, Jackqlin said it is very hard to keep up, since she has no support base. “Is me alone, I can’t even work for long because I can’t leave him by himself too long, is hard for me to control him and get him settled and it does really, really frustrate me,” she said.
There are many more cases as Jackqlin’s in Linden and the Mental Health Unit at LHC has taken a proactive approach in dealing with the cases. Currently, the unit has 496 registered patients. Despite such a heavy load, the team there, consisting of a resident physiatrist, Dr. Sandra Glasgow, three trained mental health nurses, two patientcare assistants and the social worker, has embarked on a home visit programme as a means of rendering support and educating caregivers on their role in providing efficient care to their relatives with mental health issues. The team is cognisant of the challenges caregivers experience, which can become harder with lack of knowledge.
Friday is the designated day for home care and targets caregivers having a difficult time, particularly with medicating the patient, those who have financial challenges in coming to the hospital to receive treatment and those who are noticed to be irregular in their clinic visits.
“We really need to know what is happening to them, it doesn’t make sense we are working here from Monday- Friday here and there are patients out there getting relapses. Sometimes the caretaker doesn’t really have the proper knowledge or patience to deal with their families; we understand that it can be quite hard on persons to deal with the patient but alienating them and neglecting them is not the solution; that is the most important thing with the home visit, to give them education. We let them know that with giving them love, you will see results,” Dr. Sandra explained.
Many caretakers, she said, express their rise in frustration and want to give up, particularly with patients who have irreversible conditions such as dementia and Alzheimer. These informative sessions, she said, really help, particularly mothers.
“We let them understand that not every mental health patient needs to be treated the same way. Though their situation may be irreversible, we let them know that they are still a part of the family; they are sick but they are still loved, they need care and love,” she reiterated.
During psychotic episodes, Dr. Sandra said the caretakers are urged to remain calm and are taught techniques on what can be done until medical assistance is garnered.
Attending the home visits, is Mental Health Trained Nurse, Tricia Mckenzie. In her experience with caregivers over the years, she said the stress in caring for mental health relatives stems from not knowing how to handle the situation. In addition, they have to deal with the stigma and discrimination attached to mental health, in our society.
“It’s strenuous on the carer, that is why we would educate them and tell them not to give up on them, if you see they have a relapse, bring them in, try to give them their medication on time, every time.”
Mental health diseases, she said, are not like non-communicable diseases such as hypertension and diabetes and therefore should have no discrimination attached to it. To show caregivers that they too are important in the triangle of care, for Mental Health Week 2019, the unit hosted a patient appreciation event where the patients and caregivers were treated to a day of beautification and fun.
In addition to home visits, the unit, since January, has commenced school visits to sensitise youths on drug and alcohol abuse and the signs and symptoms of depression. An anti-bullying campaign has also commenced at the nursery level where teachers and parents are engaged on the issues that affect the child’s mental health. They are sensitised on the ways of identifying the negative effects of children who are bullied, abused and depressed. They are also taught how to teach their children not to bully and to support children who are mentally disabled. At the unit, 55 per cent of the patients suffer from drug-induced psychosis, 30 per cent suffer from depression and related illnesses and 15 per cent suffer from schizophrenia/bipolar-related illnesses.
