Supporting a Loved One
When a family member becomes ill with mental illness, the whole family is affected. Besides dealing with the impacts of the illness – which may be accompanied by bizarre and frightening behaviour – family members also struggle with navigating the mental health system (and often the legal system) to get treatment for their loved one.
Serious mental illnesses, including schizophrenia, schizoaffective disorder, severe Bipolar disorder and borderline personality disorder, are devastating. Often they are accompanied by Anosognosia – the inability to recognize the illness by the one afflicted by it. Family members, though, recognize severe changes in behaviour and affect – and the natural instinct is to try to get help. All too often, that help is hard to find. That’s why FAMI-Alberta was formed: we’ve been through this and want to help others.
Serious mental illnesses may have lifelong impact on your loved one, which may be mild or severe – or somewhere in between. These illnesses can cause permanent changes to the brain. There may be:
- loss of motivation affecting the ability to work and engage in social activity
- impaired ability to relate to others
- social withdrawal and isolation
- impairment of ability to plan or organize day to day living
- disruption of thought patterns and inability to perform tasks
As well, you and your loved one may experience grief, shame, loss and fear.
Your loved one may require support for the rest of their life. Families provide 90% of the support in these situations, but families’ role as caregivers is generally not recognized by the health care “system” and families are left on their own to figure out what that role involves. This can be especially hard since these illnesses often strike in late adolescence or early adulthood – when young adults are legally independent but still depend on their parents for financial and other support.
What to do when a mental illness first occurs
Onset of a mental illness (known medically as the Pronodal Phase) can be a terrifying, disruptive time in a family’s life. Every situation is different and each may need a slightly different approach; however, the following tips from families who’ve been through it may help when you notice severe changes in behaviour that you suspect may be a mental illness
- Contact the Edmonton Early Psychosis Intervention Clinic (EEPIC), which offers services to individuals 16 to 35 years of age who have a suspected psychosis or are displaying early signs and symptoms of psychosis. Phone number: 780-342-5523
- Alternatively, try your family doctor. If your family member is willing, take him or her to the doctor to rule out a physical cause. If they won’t see a doctor, go yourself and describe what you’ve noticed – your doctor may know of resources in your community, and may be able to suggest some strategies. However, many family doctors don’t have much training in mental illness and may not know which options are available.
- If someone is experiencing a mental health crisis but is not in immediate danger, call 780-342-7777 for the Community Urgent Services Team (CUST). If you or someone else is in immediate danger, call 911.
- Keep a written or electronic record. Every day, record what behaviour you observe – be specific and factual. Also note any medical professionals you contacted, and what they said. It’s best to record these things at least once a day, when they’re fresh. The records will be handy when you consult with medical professionals, and may be useful if you ever need to seek guardianship, etc. They also help to get the events of the day out of your head and onto paper or into your computer.
- If your loved one doesn’t acknowledge having a mental illness, read I Am Not Sick, I Don’t Need Help!: How to Help Someone with Mental Illness Accept Treatment by Dr. Xavier Amador and use the LEAP technique (listen, empathize, agree, partner). You can download the LEAP section here.
- Check out the Advanced-Caregiving video series on prevention parenting, inspired by Emotion-Focused Family Therapy.
- Talk to other families who’ve been through this – or check out support groups on our resources page. You’ll likely find others with suggestions on how to navigate the system.
- Understand the illness and how it has affected your loved one – see the links on our resources page.
- Look after yourself – you’re likely experiencing feelings of guilt, shame, frustration and unconventional grief. It may feel like nothing you do is right. The causes of mental illness are complex and include genetic and environmental factors. It isn’t caused by faulty parenting.
Getting Medical Treatment
This can be difficult when a loved one isn’t willing to accept help. Often, intervention is required. In Alberta, the Mental Health Act defines how someone can be committed to hospital without their consent – known as an involuntary or formal patient. For involuntary admission, these three criteria must be met:
- suffering from a mental disorder,
- likely to cause harm to themselves or others or to suffer substantial mental or physical deterioration or serious physical impairment, and
- unsuitable for admission to a facility other than as a formal patient.
Here are some suggestions for how to get help:
- If you’re in immediate danger, call 911.
- If someone is experiencing a mental health crisis but is not in immediate danger, call 780-342-7777 for the Community Urgent Services Team (CUST). They will assess the situation and may dispatch medical and/or police personnel.
- Under the Mental Health Act, there are generally three ways a person can be brought to a facility in order to be examined by a physician:
- a physician may issue an admission certificate (Form 1);
- someone who believes a person is suffering from a mental disorder and meets the criteria may appear before a provincial judge who may issue a warrant (Form 8);
- police may apprehend the person and take them to a facility to be examined by a physician (Form 10).
- If two doctors issue admission certificates within 24 hours of being detained, the patient can be kept for up to 30 days. The family may be contacted by the doctor to provide information for the certificate. At this point the patient is known as a formal patient. However, the patient still has the right the refuse treatment (i.e., medication).
- If the patient persists in refusing treatment, a doctor can complete a Certificate of Incompetence (Form 11) that would allow treatment without consent. If that happens, parents or other family members may be called in to sign as a Substitute Decision Maker.
- The involuntary admission can be extended by the doctors at the facility.
Navigating the System
If your loved one is admitted to hospital, you may feel like you’re being treated as an outsider. The patient, whether admitted voluntarily or not, can refuse to let the medical team discuss their condition with you. Still, there are ways to be involved.
- Let the medical team know you’re there to support and advocate for your loved one.
- Try to find out what the treatment plan is and include yourself in the plan, if you can.
- Find out who the social worker is and make contact with them. The social worker should be working on a discharge plan – let them know whether or not you’re willing to take your family member back into your home.
- Even if your family member won’t permit the hospital staff to share specific information with you, you can provide information to them. Keep in mind that they aren’t obligated to keep that information confidential, and may share it with their patient.
- Even if the staff won’t give specific information, they can still give general information about the illness and resources to help you.
- Prepare to be frustrated at the lack of information. Try to support as best you can.
- Visit as often as you can. The staff will know by your presence that you’re actively engaged with the patient.
- Always treat the staff with respect, even if you disagree with them. If there’s a major item of disagreement, ask to speak to their supervisor or unit manager.
- For specific questions in the Edmonton region, call the CMHA-ER Advocacy Coordinator at 780-414-6317.
Finding Short term Housing in Edmonton
Short term housing in Edmonton can be either emergency or transitional.
- Emergency housing is for those who require supportive housing while they connect with resources and more permanent alternatives (generally six months or less).
- Transitional housing is aimed at fostering clients’ skills as they move toward stability and greater independence (generally one to three years). Transitional housing programs vary depending on the level of assistance needed. The aim is to fit clients to the appropriate housing program – though that doesn’t always occur.
There are no housing sites that will keep a client against his or her will. All require at least a minimal level of cooperation. The rent charge is generally scaled to income (e.g., AISH).
There is an extremely limited amount of short term housing, and it can be hard to find because housing units are operated by a variety of government, nonprofit and private operators. Programs take referrals from differing sources and have different conditions for entry based on what support is available. They all serve vulnerable people from many sectors: mental health facilities and programs, corrections, family violence, homeless. Few places take emergency walk-ins. Updated information about short term housing is not easily accessible. The spaces, and choices, are limited.
The best way to find short term housing is through an agency contact, like a social worker, mental health worker, addictions counsellor, psychiatrist or probation officer. Not all workers have the same level of knowledge, however, so it’s helpful to learn about the various options on your own.
Some paths to short term housing:
1. Via the family member’s social worker, therapist or agency contact – if your loved one has an assigned care worker (social worker, probation officer, mental health therapist or occupational therapist) at any agency, that person should have some knowledge and ability to refer to short term housing. If they don’t, try the other options below.
2. Find a Navigator – some agencies have staff whose job it is to help:
Canadian Mental Health Association-Edmonton Region – CMHA-ER has an Advocacy Coordinator; call 780-414-6317.
AHS Housing Outreach & Stabilization Team (HOST) – This team has a social worker available by phone who can provide some direction when navigating the mental health housing system; call 780-342-7941.
211 – This is a general number for information and referrals; they may have some ideas to share.
3. Attend the Bissell Centre’s weekly housing workshop – Two professional outreach workers will show you some of the best housing search sites out there, teach you about affordable housing and other resources in Edmonton, and help you work through the many details of housing (e.g., damage deposits, emergency housing, rental subsidies). Held every Wednesday from 1 to 3 pm at Enterprise Square, 10212 Jasper Avenue.
4. Apply for Alberta Health Services YACLS* Housing – (*Young Adult and Cross Level Services). This is an AHS housing referral program for the Edmonton area. Note: the service is for all ages, not just young adults.
YACLS is a hub for referral to housing. Download the List of YACL Housing Initiatives. To learn more about a site, call its contact phone number.
To apply to YACLS for housing:
- Your family member’s mental health therapist, doctor or social worker may know or be willing to find out about YACLS housing. If they do, see if they’ll make out the application.
- If going through a support worker isn’t an option, call the housing site you’re interested in and ask them for direction. See if you can do a self-referral by calling YACLS reception at 780-342-7754. YACLS accepts self-referrals, although referrals from a clinician or support worker are preferred.
5. Word of mouth – talk to other families in a similar situation. Ask members of your support group (find one on our resources page) or post on the FAMI Facebook group.
6. Do it yourself:
- Arrange for short term accommodation with friends or family.
- Buy or rent accommodation.
- Search out a private, for-profit operator. Note: this can be a very expensive option.
What if my loved one doesn’t believe they are ill?
- This is a common occurrence; often serious mental illness is accompanied by Anosognosia – inability to recognize the illness.
- Anosognosia is different from denial; it’s being unable to recognize the presence of the illness. No amount of reasoning or arguing will convince someone to believe something they’re unable to.
- Read these sections of Dr. Amador’s book I am not Sick, I don’t Need Help and practice the LEAP method of interacting with your family member.
- Remind them that you love them, and be as supportive as you can.
Helping in the Long Term
Those in the mental health field often talk about recovery. This doesn’t mean that someone will be “cured” but the symptoms may subside over time with treatment. Your loved one will likely be permanently affected in some way. You may have to change expectations for the future. But, for many, it may be possible to manage and create a fulfilled and happy life for your loved one and yourself.
Some things you may want to consider are housing, setting up a trust fund, trusteeship or guardianship. These all take time and patience. Check our resources and links pages for agencies that can help.