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Visions Journal

Such a Long Journey

When our adult kids still need us

Holly Horwood

Visions Journal, 2019, 15 (1), pp. 5-7, 27

After years of our daughter’s increasingly bizarre thought patterns, deteriorating cognitive abilities and mounting aggression, the news that our (then 16-year-old) child was likely suffering the symptoms of schizophrenia was almost a relief. At least we had a diagnosis and a medication plan. Our daughter is now 36, and the intervening years have taken an emotional, social and financial toll on the entire family.

Our marriage remained intact, but only due to my husband’s keen sense of humour. I retired early in order to devote more time to our daughter, who suffered numerous repeated relapses, due primarily to her lack of insight into her own illness (a condition that has its own name—anosognosia, from the Greek, roughly translated as “without awareness of disease”). Over the years, we have used retirement funds to help pay for her apartment. Our son left home as quickly as he could after high school to escape the chaos and confusion.

Through it all, our family has stayed strong. Our resilience is a testimony to the age-old family instinct to protect, love and support even our most vulnerable members. It’s a resilience built at great personal cost as family members search together for information and practical tools to help their loved one.

Different supports for different needs

When a child requires acute care, finding support is crucial. The support needed depends on the illness or disability, the kind of care required and the age of the child.

When our daughter was 19, I attended my first family support meeting with a mental health team in the Vancouver Coastal Health Region. By this point, our daughter had already been hospitalized three times with severe psychotic symptoms. Patients with schizophrenia occupy more hospital beds in Canada than those with any other single illness other than heart disease.1 Schizophrenia affects one in 100 individuals worldwide.2

I will never forget the silver-haired couple in the support meeting, whose 50-year-old son also had schizophrenia. They listened while I unloaded years of parental stress. Every once in a while, they would murmur, “Yes, we’ve been through that. Yes, we know what you mean.” For the first time, I realized our family was not alone.

That was the start of my gradual acceptance of our daughter’s illness. Over the years, our empathy, tolerance and sense of connection with people living with all sorts of disabilities—not just severe mental illness—have grown. In unexpected ways, our daughter’s illness has increased our capacity to understand and respond to the pain of others.

There is a great thirst for this kind of support and education. In October 2017, a conference organized by mental health advocate and parent Susan Inman, titled “Bringing Cognitive Remediation to BC,” filled an auditorium at Vancouver General Hospital. In April 2019, nearly 200 people attended the 12th annual full-day family education conference sponsored by Vancouver Coastal Health’s Family Advisory Committee (Mental Health/Substance Use) (FAC). The conference offered support and tools for families coping with addiction and serious mental illness.

Confidentiality, information-sharing and your adult child

One of the challenges of caring for an adult child with a mental illness involves confidentiality and information-sharing. When our daughter was first hospitalized for psychotic symptoms at the age of 16, she was considered by the health care system to be a child. As her parents, we were asked for our opinions and a history of her symptoms. We were consulted on plans for her treatment.

All that changed when she turned 17. In BC, once a patient reaches 17, parents are not automatically included in health care plans—even if the individual is clearly ill and not able to make wise decisions for themselves. After she turned 17, each time our daughter relapsed, she became alienated from us (a common symptom of psychotic illnesses) and declined to allow medical teams to speak with us.

Over time, we’ve experienced five hospital systems and three community mental health teams within the Vancouver Coastal Health regional authority. Each has its own culture when it comes to information-sharing. The approach can vary from unit to unit, even from physician to physician.

Here are some guidelines for navigating the BC health care system’s information-sharing rules:

  • Some health authorities (such as Vancouver Coastal Health) have a family involvement policy for mental health and substance use that sets out standards for inclusion, information-sharing and support. Find out if your health authority has such a policy and become familiar with it. Don’t be afraid to bring it up with your loved one’s health team
  • Under the BC Freedom of Information and Protection of Privacy Act, families can always give information. This can be valuable to clinicians, particularly in times of crisis. Your insight can help the health care team make the best care decisions possible
  • The concept of continuity of care (in which families or someone acting as family plays an important role in the life of the patient) is important to clinical mental health practice in BC. Continuity of care permits an exchange of information between clinicians and families if health or safety is at risk, or if the exchange is perceived by the clinician to be in the client’s best interests. Consider how your involvement in continuity of care for your loved one might ensure an honest exchange of information

Boundaries, responsibilities and independence over time

One of the trickiest challenges when we care for a loved one with a severe mental illness is determining how much to assist the individual in their personal struggle. Can we afford to keep giving—financially, emotionally, practically—as we (and they) get older? How do we modify boundaries as the individual’s needs and capabilities evolve over time? In the 23 years since our daughter became ill, I’ve learned that the answers to these questions are never clear or consistent.

At the 2019 FAC-sponsored family education conference in Vancouver, Frances Kenny, founder of Parents Forever, a support group for families coping with addiction, shared an excellent tool for setting and reviewing boundaries. With your loved one and other family members, make two lists that everyone can agree on: on the first list, record the things your loved one is responsible for and can control; on the second list, record the things that other family members are responsible for. Review this list on a regular basis.

In our case, our daughter has agreed that she can control how much she speaks to her “voices” when she is at our home for dinner, she can help with gardening at her condo, she can keep the cat odour in her unit to a minimum and she can maintain friendly relations with her neighbours. As her family, we can agree on how much to assist her financially and how much (often unwanted!) “advice” we give her. We can agree to regular, supportive contact through walks, healthy food delivery and phone chats.

What do families need?

My husband and I will be forever grateful for the caring and knowledgeable case managers who took care of our profoundly ill daughter when she was in crisis, providing sound advice about caring for an adult child. I remember the wise words of one case manager, who made sure that I always asked hospital physicians for mandatory “extended-leave” treatment provisions on discharge.

Extended leave provisions under BC’s Mental Health Act allow for mandating medication and regular visits with a community psychiatrist. This is not always welcomed by the client, but these provisions have saved our daughter’s life. Because of her lack of insight into her own mental illness, our daughter has always relapsed when she was no longer on extended leave. This has led to her losing her job, starving herself and suffering psychotic delusions.
Freedom to become psychotic is not real freedom in my opinion. Extended leave legislation gives our daughter the freedom to return to her life in the community with the provision of mandatory medication. She knows that if she does not take her medication, she faces the prospect of being returned to hospital.

Drawing on our experience, this is what I feel the health care system must offer BC families:

  • the ability to empathize, listen and validate us as families that play a vital role in the care of our adult child
  • the ability to balance the need for client confidentiality with the needs of the family to be included in diagnosis, treatment and discharge plans
  • prompt, caring, effective action during a crisis. Obtaining effective medical help and diagnosis for an adult child in a timely manner is still very difficult, even though the risks (to the well-being of the individual and the individual’s family) can be extreme
  • access to evidence-based medical and psychosocial education. Families need guidance on available medical and social services, resources and peer and community support
  • access to evidence-based rehabilitation services so that individuals can begin repairing any cognitive damage the illness has caused
  • recognition that in some cases of profound psychosis, mandatory treatment—including medication—is required
  • the inclusion of families and clients in policy and program planning

Suggestions for caregivers across BC

I have accepted that our daughter will never be truly independent, but our role as parents is to support her so she can live as independent a life as possible and recognize when she may require more support than she usually does. It’s a challenging role, but there are several options available. If you are a caregiver, or if you would like more information, here are a few suggestions:

  • Join the BC Schizophrenia Society’s monthly support meetings (for anyone with a loved one showing signs of severe and persistent mental illness) and register for the BC Schizophrenia Society’s excellent 10-week Strengthening Families Together series. Details of both can be found at www.bcss.org
  • Ask questions of the Vancouver Coastal Health’s Family Support and Involvement (FSI) team (or the equivalent team for your health authority)
  • Visit bcpsychosis.org/resources-for-families/ to learn more about resources for families dealing with severe mental illness

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