The Challenges of mental illness caregiving
The realities of the care and responsibility when a family member is disabled with a schizophrenic illness
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
A young psychiatrist finds understanding and perspective
While in my psychiatric training, I cared for people with schizophrenic-like conditions in some hospital or residential care settings. Their illnesses had a mixture of symptoms, including auditory hallucinations of sounds as hearing voices or visual hallucinations, which we later learned were more apt to be from other types of brain illnesses are related conditions. Often the person would be caught up in unrealistic or delusional ideas, which seems like they fully accept their fantasy beliefs or inner narrative, which sometimes were fearful for them. The higher functioning with their thoughts and behavior might have fixed paranoid delusion where they would accept the reality of their delusional, inner narrative, such as that the government or police were after them or that there was some sinister plot against them.
In the history of psychiatry, before medications, people with these more severe conditions would be locked away in institutions. With the advent of medicines and better management of symptoms, the person could go home supervised in a less restrictive living situation. There was the increased availability of residential or halfway houses where the needed management occurred at the expense of the state, the families, the insurance company, or some combination of them. The medicines were never a complete cure for the condition, but medications made it more manageable for the person themselves or their caretakers. Drugs helped decrease their active psychotic symptoms, anxiety, and dangerous acting-out behaviors.
The teaching for us in training was that schizophrenia was a rather chronic illness for most that could get worse with time or remain a highly debilitating illness manageable with medications. When there was a need for a high level of care, residential housing provided supervision with medication management. A return home was made possible with drugs and management as required by a significant other or the parents.
There were many challenges in my early practice years working either in community mental health or in programs connected to the hospital or private practices. One of the most challenging things for me was when I would see a young adult and see all the early diagnostic signs of a schizophrenic-like condition. Though it could occur at different ages, it seemed typical when growing into young adulthood and being up against more stressful life demands as when entering college or a new job with all its challenges.
Odd or dysfunctional mentation or behavior appeared, and the person came into my office for evaluation. When I saw the person for the first time and recognized the telltale signs of schizophrenia, it was tough to tell the parents, as I knew how frightening and devastating it would be. They would need to come to terms with the possibility that their child or loved one, with the stoppage of their development and onset of odd behavior and cognitive difficulties, potentially had a schizophrenic illness.
By the time I saw the parents, they had understood something was majorly amiss, but they hoped it would be a treatable condition that would return the person to everyday life. When I had to share my observations and opinion, it was overwhelming for the parents and myself. In my early years of training, I remember being so distraught that I felt like crying, and I think I ended up embracing the parents and crying with them occasionally.
Now I have a much larger perspective and acceptance that many things can occur in one’s lifetime to which one has to adapt and cope. Different mental illnesses can happen to anyone related to various reasons and situations. When a disease or problem develops, the person must rely on their deepest resourcefulness, coping skills, and external supports, such as friends, family, and the support system. Unfortunately, there are currently great difficulties and limitations to the mental health system, which has added to what parents must negotiate and go through to get the help and support they need in the care of those under their care or responsibility. The lack of service makes it more difficult and a burden for the individual with the difficulties and the person responsible for their management when a mental illness occurs.
The challenge and toll on caregivers
The emotional crisis for the parents and all involved when a mental illness more suddenly becomes apparent is an emotional time and intense situation for most. When the onset of a mental health condition is gradual, the person and family have more time to prepare and adapt to the needed acceptance of reality and coming challenges.
According to a Mayo Clinic report, about a third of adults in the United States provide care to other adults because of our aging population; the number of caregivers would be much higher if statistics included ill or disabled spouses or partners and disabled children.² Most caregivers are not healthcare professionals.
Some signs of caretaker exhaustion, stress, and risk of ill health are:
- Feeling inundated or constantly anxious and tired
- Sleeping either too much or too little
- Changing weight
- Becoming quickly annoyed and angry
- Losing enthusiasm for things you used to appreciate and feeling depressed
- Having recurrent headaches, bodily aches, or other physical issues
- Misusing alcohol or medications, including prescription drugs
- Experiencing constant worry, depressed feelings, or nervousness
- Being unable to get enough rest, exercise, or nutritious food
As a young medical student, I remember being mentored by a seasoned neurosurgery resident who had been a fighter pilot during the war and had been in life-and-death situations. Late in the night, I followed him into the emergency room, as I was under his supervision as a medical student. We saw an ambulance bring in a child in an accident while riding his bike when hit by a car. He was followed to the emergency room by his parents. The neurosurgery resident I shadowed was well accustomed to the trauma of life and death from being a fighter pilot in the war zone. He consoled the parents in a calm, collected, and empathetic way and delivered the tragic news that their son had died in the accident. Though they were anticipating the worst, this death was beyond anything they had expected.
I was like an observer bystander but struck by the gravity and immensity of the situation. It became one of many experiences that brought me to the reality of the unexpected traumas and loss experiences that can happen to anyone. It was part of my learning and acceptance of our limitations in doing or controlling things and that we can only strive to do our best, to be aware, learn, and be helpful in our life journey. And at our best, we can only do the best we can with our given limitation to control and manage.
Meeting my mother’s cousin, a Holocaust survivor, likewise brought me to the greater reality of how drastic and traumatic changes and loss occur, that call on our deepest survival instincts and resourcefulness to endure and meet the challenges when the unforeseen happens.³
See the companion article Schizophrenia the Stigma, Reality, and Hope.⁴
TIPS and POINTS TO PONDER
1. Schizophrenia is a severe mental illness and potentially debilitating disease that affects how a person thinks, feels, functions, and behaves. It can cause psychosis and lead to disability that may affect functioning in multiple areas, including personal, family, social, educational, and occupational activities. About one in three people that develop schizophrenia will recover fully when effective care options are available. Support for funding, research, and services will require as many advocates and public-minded servants as possible.
2. While currently, there are no definitive cures for schizophrenia, a minority of those affected will go into complete remission. Effective treatments are available to help manage symptoms and improve the quality of life for most others with the illness. 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.
3. Better-informed people about the difficulties and debilitating nature of schizophrenia or other mental illnesses will lead to less stigma, discrimination, and violation of the human rights of those afflicted with the disease.
4. When being a caregiver of someone with a mental illness or schizophrenia, recognize the challenge and accept help from others, friends, or family members. Please acknowledge that we all have limitations, and it is impossible to do everything. Bypass the feelings of guilt and overwhelm and do your best with the limitations of resources or your capabilities and accept or get help. Find and use community resources when available.
5. Choose achievable goals that are doable. Divide large tasks into smaller steps you can do one at a time. Rank, make lists, and create a daily plan. Begin declining requests that are draining and not socially supportive of you. Find out about caregiving resources in your area. Many communities have supportive services for transportation, meal delivery, or cleaning services.
6. Take part in a support group that can provide support and motivation and helps with problem-solving for complicated predicaments. Take the time to stay in contact with nonjudgmental family and friends who can be emotionally supportive. Schedule some time each week to interact, even if it’s just a stroll with a companion.
7. Take care of your critical health needs by getting into a good sleep routine and the proper amount of restorative sleep. Make time for active movement and exercise daily to support your well-being and health. Follow the best nutritional guidelines, eat regularly, and make the best food choices. If you have difficulty sleeping, check with your healthcare provider resources.
8. Have a list of support resources, services, your doctor, or community mental health professionals you call when you feel things are getting overwhelmed or out of control. Check out the resources below.⁵
The article was originally published on Mind Wise with tips, references, and resources.
I recount an early life story that brought me to the realities and risks of the extreme passions and ideas we can get caught up in as individuals or whole societies with positive or devastating outcomes. My mother’s lost cousin — Iren. When I was a child in the early-to-mid 1…
⁵ Articles and resources about Schizophrenia and caregiving:
Volume 40, 2019 — Issue 4; https://www.tandfonline.com/doi/full/10.1080/01612840.2018.1524531