The realities and challenges of mental health-related disabilities and caregiving for a family member: Newsletter 12/15/22
Two articles inspired by an autobiography written by a friend and recent trip downtown with the apparent plight of the homeless and those disabled with mental illness.
Schizophrenia, the Stigma, Reality, and Hope - 1st new article
Today is a Sunday, and my wife and I headed downtown to grab a bite in the festive downtown atmosphere of Asheville. Things have changed in the past couple of years with the economic downturn and COVID-19, with more people having difficulty making ends meet to survive these difficult times. As we got out of our car and parked in an area downtown under the highway bridge, there appeared to be more homeless people gathering, especially as they would have a soup kitchen there later in the day. Several people were waiting near where we parked, sitting, or milling about. We walked up towards the downtown area, following a young man, perhaps in his thirties, looking disheveled with a backpack and carrying a large green trash bag with his belongings. In my mind, I thought that he probably had a significant disability, could not find any employment or support from families or friends and was forced to be homeless.
As we got closer to the downtown area where we were going, we passed a bench near a parking lot where three men, probably in their thirties to fifties, were sitting with green trash bags beside them with the appearance of also being homeless. As we passed them, another young man appeared in a rage, swinging his arms in the air and loudly voicing his grievances about injustices. He had some involuntary movements of his arms as he yelled angrily and shouted toward imaginary voices and people not there. As we grew near, his anger escalated, and he started swinging wildly and punched the side of the outside wall of a public porta pot with all his might. He then pivoted and seemed to come towards us, swinging his arms in an agitated way. As I was familiar with the behavior, having worked with others with similar disabilities, I knew to give the person in a frantic rage space and to back off. Once or twice, a patient assaulted me in the beginning years of my mental health work, but luckily with no serious injury.
My wife beside me was terrified and moved out into the street as I did until we got around him. Now I wanted to contact emergency services but was reluctant to do so as I knew that if the police arrived, it would be hard to say what the outcome would be. Also, no immediate emergency response mental health service would be immediately accessible. We continued up and around the block to get my wife to a place of safety, and we talked a little about the situation with so many homeless people that need mental health services and the current inadequate funding and availability of mental health and social support services.
In a calming way, I talked with my wife about the difficulties that can develop with a schizophrenic illness and my experiences working with the homeless and schizophrenic population in the community mental health services and psychiatric hospitals. As my wife listened, she thought of the young man we had just passed and some of our family members with disabilities who fortunately had a social support network around them and access to needed services. As she was frightened by the experience and upset at the plight of the disabled young man, she felt overwhelmed and cried.
When she felt safe, I turned and walked back to see how the young man was doing to see if any help might be available. He wasn't there, even though the three homeless men were still sitting on the bench. As I walked a little further down the street, I saw the same young man who seemed more composed and calmer as he was getting some coffee and some food from an open window service of a restaurant there. He was still a bit confused and kicking at small objects like rocks and cans as if to clear them away from the sidewalk to create orderliness. I surmised that he had an open space earlier to vent his anger, and fortunately, no injuries occurred, including to us. He had let out his rage, and maybe somebody had provided some money. Or he had gone to the open restaurant window nearby, and they had given him some coffee and food.
We later returned to our car, parked in the lot under the bridge. A more significant number of homeless people were milling around or waiting to get food or drink in the portable food kitchen that had just opened.
Awareness and knowledge to resolve ignorance and stigma about mental illness
Schizophrenia is a potentially debilitating mental illness affecting people's thoughts, feelings, functions, and behavior. It can cause psychosis and lead to disability that may affect functioning in multiple areas, including personal, family, social, educational, and occupational activities. It is more difficult for people with persisting schizophrenia to learn and accomplish things as others. While currently, there are no definitive cures for schizophrenia, effective treatments are available to help manage symptoms and improve quality of life. With the proper support and treatment, people with schizophrenia can improve symptoms and live more independently and productively. More awareness about schizophrenia, its causes, symptoms, diagnosis, and treatment options will increase understanding and support for this underserved community.
Read the complete article with valuable information, tips, references, and resources
The Challenges of mental illness caregiving - 2nd new article
Parents or caregivers can find themselves in uncharted waters. Many get caught unprepared when a mental illness affects a loved one, spouse, child, or significant other. Though previously fully independent and entirely responsible, the person now disabled rapidly or slowly becomes dependent on a caregiver's help, support, and management. The descent into illness and dysfunction caused by the mental disorder calls on the extreme resourcefulness of the one beset with an unimaginable level of additional responsibility.
Whether a mental illness or when a relative, a child, or a parent develops any illness or disability that requires a responsible person to be in charge or accept some level of care or administrative duties for a significant other, the challenge can seem daunting and impossible. The situation might be any unanticipated disruption to the family and relationships as the development of a mental illness, dementia of a loved one, a devastating medical disease, or an injury from an accident. The responsible person must assume a heightened supervisor and care-related responsibility for the significant other.
When and while one is developing an illness and becoming disabled, the person in line to be the caregiver can want the troubled person to fend for themselves or survive with whatever resources are available. To be the responsible one or the caregiver can be a difficult-to-bear burden. For another, a labor of love that gives some level of personal gratification. Some go into denial, avoid the feeling of responsibility, look for others to be the caregivers, or assume responsibility. Frustration is high when the person wanting to be responsible for another cannot control the circumstances, such as trying to help a relative with an ongoing substance abuse problem with the needed resources not available to address the issues or needs.
A family member or significant other may develop one of the many types of mental illnesses, which is incapacitating and debilitating and requires help managing day-to-day activities or supervision. When a family member with severe schizophrenia becomes unmanageable or a danger to self or others and needs a more secure, higher level of care than can be offered in a home or by community services, hospital or residential treatment may be required.
The troubling resource issue
A dilemma with support or therapy, or educational resources, even when available, occurs when the ill person rejects or won't avail themselves to use the services that could have been helpful. Still, the one in need may have refused or not fully complied with services, or the appropriate and needed service was not available. Often there is a lot of guilt and remorse about not having done enough for the one for which you felt the responsibility. The feelings are hard to avoid, even though the best possible was tried or offered.
A friend and neighbor recently wrote an outstanding autobiography and educational resource for people unfamiliar with the travails of having a family member affected by a mental illness and struggling to cope and find recourses. It is a heartfelt and captivating story of the struggles and anguish of a family caught in the grips of an unforeseen challenge of a family member developing schizophrenia. With courage and facing the realities and growing demands, they meet the challenges as told in a beautifully written personal story of love and compassion. Two Hearts on a Rocky Road by RoseLynn Katz.1
Read the complete article with valuable information, tips, references, and resources