Tag / mental health

sad caregiver at Christmas
by karentwinem

Holiday Tips When Someone You Love Has a Mental Illness

The holidays can be some of the worst days of the year when your family is dealing with mental illness.  Not only is it TOO DARN DARK AND COLD, but it’s also a time when expectations of being Merry and Bright can seem especially hard for your family. The stress can make your loved one have more symptoms, and that can make you even more anxious.

Here are 14 tips to handling the holidays. Some ideas were suggested by an excellent book:  “When Someone You Love Has a Mental Illness: A Handbook for Family, Friends, and Caregivers” by Rebecca Woolis.  Others are things I’ve learned, often the hard way, over time.

  1. Accept this ain’t gonna be pretty.  If you can get rid of your unrealistic expectations and be honest with your loved one and all the other family members, it will go better.
  2. Help your loved one to keep her dignity. Provide a gift fund or another way to allow her to give gifts, so she won’t feel left out if she has no money. Scan every situation that’s coming up to make sure that your loved one won’t get unwelcomed attention.
  3. Hey, it’s a good excuse to keep the unofficially crazy family members away.  You want a small gathering of your own family. Period. Otherwise it’s too stressful for your loved one.
  4. Keep it short. Keep it informal.  If you have to do the Big Family Thing, let your loved one stay home. Big groups are too much for your loved one, especially when you have to Put On a Happy Face. And do your own celebration. 
  5. If any extended family members really want to see your loved one, they know your phone number and where you live. Something private is better.  And try not to be bitter if no one asks. (There’s a reason God chose you to be this person’s lifeline. Not everyone can deal with this.)
  6. The best answer I’ve found to the question … How is he? … is “About the same.” That’s tough enough for you to answer.  So please don’t put your loved one in a situation where he or she has to answer the question.
  7. If you are having an event at your house, discuss it in advance with your loved one so he or she knows what to expect. Accept his limits.  Accept her choices. Acknowledge his feelings. 
  8. If the person wants to be more visible during the holiday, brainstorm some things in advance.  What will he say when asked how he is? What will she do during the gathering? Is there a quiet place to retreat if needed?
  9. Tell the person whose home you are visiting what you may need in advance.  Please don’t put yourself in a position … helping cook at someone else’s home, for example … where you can’t leave with little notice. If you are stuck, have someone … a sibling or spouse … available to get the person home if needed. 
  10. All your great preparation may result in your loved one refusing to participate at the last minute. And that’s OK. 
  11. If someone offers to help you with any holiday preparation, ACCEPT. 
  12. When you make out your own Christmas wish list, see if you can ask for things that will reduce stress, whether it’s a massage, a day trip, a cleaning service or a gym membership. 
  13. Eat right. Avoid the alcohol. Sleep. And write out a list of things that you are grateful for this year.
  14. A nice thank you card to people who have been helpful to your loved one personally or professionally is always good.
housing
by karentwinem

Housing for People with Mental Illnesses

Note: Sources of information for this post are NAMI.org, southeast.org, ood.ohio.gov, “When Someone You Love Has a Mental Illness” by Rebecca Woolis, and my six years working in an organization that provided housing for the mentally ill.

The lack of safe and affordable housing is one of the most powerful barriers to recovery from mental illness. When this basic need isn’t met, people cycle in and out of homelessness, jails, shelters and hospitals.

I agree with a philosophy called Housing First: Having a safe, appropriate place to live can provide stability to allow people with mental illness and/or substance abuse to stabilize and recover. Unfortunately, this housing is relatively rare. It takes organization and effort to get someone into the system.

As we all know, there’s not enough funding to cover the needs of people with mental illness. If the funding existed, case managers, social workers and vocational counselors would be handling housing and money issues for our loved ones. Since there isn’t enough money to go around, families often have to get involved.

Because of this, my No. 1 tip in dealing with the system is to make friends with a social worker. I met social workers at NAMI family support groups and events. This was invaluable in helping me understand how the system REALLY works. I also got excellent advice about where my son should be placed on a waiting list for housing.

What the Law Says

Several pieces of federal legislation prevent discrimination against people with mental illness in employment and housing. The most important in obtaining housing is Title VIII of the Civil Rights Act of 1968 (the Fair Housing Act). For most residential buildings (except some small owner-occupied buildings), this law forbids discrimination, such as refusing to rent or sell, denying that housing is available, and renting or selling on different terms.

That said, a history of arson and/or sexual assault usually keeps individuals out of housing for people with mental illness. Housing for people with mental illness is usually called housing for the disabled, in part to keep the neighbors from fighting it. People who are currently homeless usually get more help from organizations than those who are not.

Obtaining Housing

Many people with a serious mental illness live on Supplemental Security Income (SSI), which averages just 18% of the median income and can make finding an affordable home near impossible.

Housing options range from completely independent living to 24/7 care. The type of housing that is right for your loved one can depend on whether they need assistance paying bills, cleaning and making appointments or require no assistance at all. Here’s a look at some of the housing available.

Supervised Group Housing: Trained staff members are present 24/7 to provide care and assistance with things like medication, daily living skills, meals, paying bills, transportation and treatment management. These group homes provide their residents with their own beds, dressers and closet space, and shared bathrooms and common areas. This is the best type of housing for people experiencing a serious mental illness which may affect their ability to perform their daily tasks.  There’s virtually none of this in my part of the country, central Ohio.

Partially Supervised Group Housing: Some support is provided for the residents, but staff isn’t there 24 hours a day. The residents can be left alone for several hours and are able to call for help if needed. People who choose to stay in these group homes can perform their daily living tasks independently or semi-independently, help with cooking and cleaning and may even hold a part-time job or participate in a day program.

Permanent Supportive Housing: Supportive housing provides very limited assistance. The residents of these homes live almost independently and are visited by staff members infrequently. Community mental health center and social workers on site to help. Health care comes in.

Rental Housing:  Rent can be paid for in full by the individual or subsidized by a third party, such as the government or a non-profit agency. Someone who chooses this type of housing can take care of all their basic needs like cooking, cleaning, paying bills and managing their medication. They also may have a job and have or be seeking custody of children. If this is the right type of housing for your loved one, then they will still most likely work with a caseworker to manage their recovery.

Affordable Senior Housing: When your loved one becomes 55 or older, they usually qualify for affordable senior housing, such as offered by National Church Residences in 25 states. This housing for low-income seniors has no supportive services.

Ways to pay

Section 8: The United States Department of Housing and Urban Development (HUD) provides a number of housing assistance and counseling programs. The Housing Choice Voucher Program (Section 8) is the federal government’s program for assisting low-income families, the elderly and the disabled. HUD also helps apartment renters by offering reduced rents to low-income residents. Under this program, a renter pays 30 percent of their gross adjusted income for housing and utilities. The landlord then receives a voucher from the federal government which covers the remainder of the rent.

Section 811: The Supportive Housing for People with Disabilities Program (Section 811) is a federal program dedicated to developing and subsidizing rental housing for very or extremely low income adults with disabilities, like a chronic mental illness. The biggest difference between this program and similar ones is that it provides housing specifically for the disabled and ensures that all housing has access to appropriate supportive services like case management and employment assistance.

Applying for housing

If you can get a social worker or case manager to help fill out applications for jobs and housing, do so. You can practice any interview with your loved one. Interview tips include:

  • Don’t volunteer information about medical history.
  • Do not lie about job history, including positions held or lengths of time worked.
  • If asked about gaps in employment history, you can say “I was recovering from an illness,” “I was participating in a vocational rehab program” or “I was taking some classes.”
  • If there’s concern about ability to pay rent, you can say, “I have a guaranteed disabilities payment.”

Co-signing a lease makes you legally responsible for making sure the rent is paid during the period of the lease. Before you decide to do this, assume that you will pay all the rent and look at how that will impact you. Make your decision based on that. You also may become responsible for damages to the apartment, so be aware of that as well.

Housing in Columbus Metro Area

To apply for Community Housing Network housing, please call the Community Housing Network Intake Department at 614-487-6700. CHN has developed and manages more than 1,200 apartments. CHN provides rent subsidies to an additional 400 residents renting from private landlords. CHN also provides all customary property management.

National Church Residences takes its residents through Community Shelter Board, so call there.

To apply for Unified Supportive Housing System, apply for Alcohol, Drug and Mental Health Board of Franklin County housing, go to the Community Housing Network website, complete the CHN USHS Housing Request and submit to the CHN Intake Department.

Housing providers include:Alvis, Equitas, Community Housing Network, Maryhaven, National Church Residences, Volunteers of America of Greater Ohio, YMCA, and YWCA. These organizations usually take the homeless first. Ways to be homeless can vary, including couch surfing, or staying for one friend after another.

Next time we will talk about processes for getting a job when your loved one is recovering.

the road to recovery
by karentwinem

Recovery: How Do We Get There?

Note: This information comes from my own lived experience, notes from various seminars I’ve attended and “Grace for the Afflicted: A Clinical and Biblical Perspective on Mental Illness” by Matthew A. Stanford.

No matter how difficult the circumstances are, people who have mental illness may recover. In fact, between 60 percent and 80 percent of people with mental illness who get and stay in treatment show recovery.

Mental illness is a chronic condition, meaning we can manage symptoms but not cure the disease. So what does “recovery” mean?

The Substance Abuse and Mental Health Services Administration defines recovery as “a process of change through which individuals improve their health and wellness, live a self-directed life and strive to reach their full potential.

What does recovery look like?

For people with mental illness, it means going from Distress to Stability to Function to Purpose. For you, it means moving from Caregiver to Manager to Partner to Family.

The process is hardest on Americans because of our culture

Mainstream American culture values individuality and independence more than any other culture. This can cause U.S. caretakers to think caring for an adult is unusual, while it’s accepted as part of life in other cultures.

Recovery requires a holistic recovery effort that takes months or years, not days or weeks. Here are some of the issues that need to be addressed:

Physical needs

Sleeping well: Up to 80 percent of people with mental illness have chronic sleep problems as opposed to 10 to 18 percent of people without. The most common issues are insomnia and late insomnia. This is important because sleep deprivation can result in suicidal ideation, paranoia and agitation. To sleep well, encourage your loved one to try these tips:

  • Have the same bedtime with same routine every night.
  • Reduce caffeine.
  • Talk to their doctor.
  • Take effective medication.
  • Learn relaxation techniques.

Eating healthier

Doing exercise such as walking or gardening

Emotional and mental needs

Developing healthy thinking patterns: Your loved one’s therapist can work with them until they maintain healthy thinking patterns. Some things they need to learn are:

  • How to suppress negative thinking
  • How to accept a negative situation
  • How to recognize cycles and triggers
  • How to take a preventative approach when a relapse seems likely

Doing activities that heal the brain: Research suggests that active mental activities have a healing effect on the brain. Watching TV or movies are passive activities, which do not help. Active mental activities include:

  • Painting and drawing
  • Reading
  • Photography
  • Music
  • Gardening
  • Word games or puzzles

Living a structured life: Daily and weekly routines also reduce stress and bring a sense of safety.

Spiritual needs

Discovering hope in Jesus: We can help our loved ones understand what they mean to God. People with mental illness often feel that God doesn’t love them or that their faith isn’t strong enough. You may be able to help them to understand their identity in Christ. Even heroes of faith like David (Psalm 13), Job (Job 3), and Jeremiah (Lamentations 3) struggled with times of intense hopelessness. Encourage your loved one to share their feelings, requests and gratitude for what is good in prayer.

Finding purpose: Your loved one has a purpose in God’s plan that is just as important to God as everyone else’s. In fact, their heaviest cross … a mental health situation … can be an opportunity for God to manifest in their lives.

Growing spiritually: Focus on God’s love and your loved one’s identity in Christ rather than working on scriptures that focus on sin. Brief daily encouragements from the Bible are better than in-depth Bible study. Encourage them to check with you or others when they think they are hearing directions from God’s voice. Worship is good, but it should not be too stimulating or overwhelming.

Living in community: My church, Vineyard Columbus, has a One-Minded in Christ support group for people with mental health diagnoses. Check to see if you can find something like this in your community.

Relational needs

Stay connected to a few trusted and supportive people: Supportive friends and family are essential to recovery, but the friends and family also need the support of others. Some of the best ways you can help are:

  • Learn to resolve conflict, to defuse your own tension.
  • Learn to validate emotions.
  • Learn to affirm their faith in Christ.
  • Help them find opportunities to serve.

Recovery is possible. As we hope and pray, let’s take these steps to help our loved ones.

exhausted caregiver
by karentwinem

Taking Care of You

As a caregiver, you’ve heard this analogy endless times: Put on your own oxygen mask before you help others. It’s true. Caregivers need times of rest … and reflection.

God urges us to rest in both the Old and New Testaments.

“Six days you shall labor, but on the seventh day you shall rest; even during plowing season and harvest you must rest.”

Moses, Exodus 34:21

“Come to me all you who are weary and burdened, and I will give you rest.”

Jesus, Matthew 11:28

God taught us that rest is a very important Christian concept. We are taught to be obedient in having a regular Sabbath, inclusive of all people and animals in our household, even when it’s the busiest time for making money. God gives rest as a gift to his people in this life and in eternity.

What’s stopping you?

The Family Caregiver Alliance reports that a caregiver between the ages of 66 and 96 who is experiencing mental or emotional strain has a risk of dying that is 63 percent higher than that of people that age who are not caregivers. Despite this scary statistic, caregivers are less likely than others to take care of themselves. The Alliance says that we don’t get enough sleep, have poor eating habits, don’t exercise, don’t stay in bed when we are sick, and don’t go to the doctor when we should.

If that isn’t enough, the Alliance says an estimated 46 percent to 59 percent of us are clinically depressed.

If you collapse, your loved one collapses. So ask yourself why you don’t take care of yourself. The Family Caregiver Alliance offers these questions to consider:

  • Do you think it’s selfish to put your needs first?
  • Do you become scared when you think about what you need? Do you know why?
  • Do you have trouble asking for help?
  • Do you think you need a treat (food, cigarettes, alcohol, a Netflix binge, etc.) because of your caregiving?

Pray through these questions with God and see what you find out. I believe it is God’s will that we take care of ourselves, but I know how hard that is to do. I fail often at it.

Rest and reflection go together

Many psalms, including Psalm 23, talk about rest in a reflective manner. As we are resting, we have the opportunity to look on our lives. Sometimes we are afraid to do that, afraid that the trauma of our loved one’s mental illness is too devastating. Afraid that, if we start crying, we will never stop.

That’s easy to understand. Yet resting and reflecting may give you more energy and more peace of mind for whatever you are facing when you do both regularly.

Taking care of yourself … getting enough sleep, taking a Sabbath, eating nutritious food and moving your body regularly … makes you stronger physically. Spending time with God makes you stronger mentally, emotionally and spiritually.

Look for God’s presence in your life

A great way to pray is to look for God’s presence in your life. More than 400 years ago St. Ignatius Loyola encouraged prayer-filled mindfulness by proposing what has been called the Daily Examen. The Examen is a technique of prayerful reflection on the events of the day in order to detect God’s presence and to discern his direction for us. Try this version of St. Ignatius’s prayer.

Become aware of God’s presence. Look back on the events of the day in the company of the Holy Spirit. The day may seem confusing to you—a blur, a jumble, a muddle. Ask God to bring clarity and understanding.

Review the day with gratitude. Gratitude is the foundation of our relationship with God. Walk through your day in the presence of God and note its joys and delights. Focus on the day’s gifts. Look at the work you did, the people you interacted with. What did you receive from these people? What did you give them? Pay attention to small things—the food you ate, the sights you saw, and other seemingly small pleasures. God is in the details.

Pay attention to your emotions. One of St. Ignatius’s great insights was that we detect the presence of the Spirit of God in the movements of our emotions. Reflect on the feelings you experienced during the day. Boredom? Elation? Resentment? Compassion? Anger? Confidence? What is God saying through these feelings?

God will most likely show you some ways that you fell short. Make note of these sins and faults. But look deeply for other implications. Does a feeling of frustration perhaps mean that God wants you consider a new direction in some area of your work? Are you concerned about a friend? Perhaps you should reach out to her in some way.

Choose one feature of the day and pray from it. Ask the Holy Spirit to direct you to something during the day that God thinks is particularly important. It may involve a feeling—positive or negative. It may be a significant encounter with another person or a vivid moment of pleasure or peace. Or it may be something that seems rather insignificant. Look at it. Pray about it. Allow the prayer to arise spontaneously from your heart—whether intercession, praise, repentance, or gratitude.

Look toward tomorrow. Ask God to give you light for tomorrow’s challenges. Pay attention to the feelings that surface as you survey what’s coming up. Are you doubtful? Cheerful? Apprehensive? Full of delighted anticipation? Allow these feelings to turn into prayer. Seek God’s guidance. Ask him for help and understanding. Pray for hope.

St. Ignatius encouraged people to talk to Jesus like a friend. End the Daily Examen with a conversation with Jesus. Ask forgiveness for your sins. Ask for his protection and help. Ask for his wisdom about the questions you have and the problems you face. Do all this in the spirit of gratitude. Your life is a gift, and it is adorned with gifts from God. End the Daily Examen with the Lord’s Prayer.

Yes, the Lord’s Prayer does help us to put on our oxygen mask first. For Jesus loves our family members even more than we do.

two sets of family hands holding one heart
by karentwinem

Eight Steps to Balance Family Needs

Information for this post comes from NAMI.com, “When Someone You Love Has a Mental Illness” by Rebecca Woolis, MFCC, and my own experience.

When you have a family member, particularly a child, with a mental illness, it is easy to let your concern for them consume your life. This backfires, damaging you and the rest of your family. These eight steps can help you balance your family’s needs.

1. Take care of yourself.

If you don’t care for yourself, the whole family may suffer even more. You may have to adjust your priorities or your lifestyle, but you should avoid letting the challenges posed by your loved one’s mental health condition make you neglect other important parts of your life.

In some cases, the stress of dealing with a family member can create your own mental health challenges. If you begin to feel that you are struggling with sadness or anxiety, do not hesitate to seek treatment for yourself. Caring for your own mental well-being will serve as a model for your loved one to follow, and ensure that you are healthy and able to care for your family member.

2. Be intentional about time with other family members.

Remember that if you have other children, they may resent being pushed to the side if all the attention is placed on their sibling’s mental health challenges. Make sure that they understand what their sibling is going through, and that you spend time with each of them. Keeping a happy and balanced family can be very helpful in reducing stress levels for everyone, which can help alleviate symptoms of mental illness.

3. Get your family involved.

Don’t try to “spare” family members from stress by taking on all the caretaking yourself. Work together to give everyone in the household roles to play according to their abilities. Include your family member with the illness as well, making his or her responsibilities to the family clear.

Other family members may deal with the challenges and obstacles differently that you would like. So be ready to compromise, listen and be open to new ideas.

It is possible you may discover that some members of your family have little interest in supporting you and your child in dealing with challenges posed by your child’s mental health condition. It is also possible that a spouse or significant other may be a negative influence on your child. They may demand discipline for behaviors your child cannot control, deny that there is anything wrong or insist upon an irrational course of action.

Helping to raise a child who has a mental health condition can be stressful, and it is unrealistic to assume that anyone, yourself included, will always react in an ideal way. However, you must also realize that it is your responsibility to protect your child, even from others that you care about.

4. Resume “normal” activities and routines.

Don’t let life revolve around your family member’s mental health condition. Return to a regular routine within the family. Spend time together on activities unconnected to illness, such as watching a movie, eating dinner out or visiting a favorite park. Practice living life with a mental health condition, rather than struggling against mental illness.

5. Answer these questions to decide how to spend your time.

Consider these questions to find the balance that’s best for you and your family.

  1. How much time can you spend with your ill family member without resenting him or her? (for example:  two hours a day, one visit a week, one phone call a week, etc.)
  2. How much time do you need to spend with your ill family member to keep the relationship as good as possible in the long run?
  3. How much time do other family members want and need?
  4. How much time do you need with the Lord to feel His presence?
  5. How much nurturing do you need, either as time alone or time with well friends and family?
  6. How enjoyable and valuable is the time that you and your ill family member spend together? How do each of you feel after spending time together?
  7. Are other family members showing signs of stress, such as physical symptoms, disturbed sleep and eating habits, or depression and anxiety?

Base your time spent with your loved one, either at home or in a visit, on the answers to these questions.

6. Decide about living at home.

Mentally ill people tend to function as their highest levels and their families do the best when the mentally ill person lives somewhere other than the family home.  However, it is very hard to find permanent supportive housing and other housing for the mentally ill.  It can take years. 

Living at home tends to work best if the loved one:

  • Functions at a relatively high level, without many obvious symptoms.
  • Is female.
  • Has friends and does activities outside the home.
  • Does not have any siblings living at home.
  • Participates in treatment and some type of structured activity outside the home.
  • Has a family that has developed skills to be calm, positive, respectful and nonjudgmental of the ill person.

Having the loved one live at home is not advised when:

  • The symptoms are so disruptive that the family cannot live a normal life.
  • Siblings living at home feel adversely impacted by the ill person.
  • Family members are angry at, frightened off or critical of the ill person.
  • The parents’ marriage is negatively impacted in a strong way.
  • The ill person begins to control family members who are then unable to have their normal routines and activities.
  • The ill relative has no outside friends or activities.
  • The family is a single parent alone.

I believe permanent supportive housing is the best choice for people with mental illnesses. You can check with your local Housing Authority or community shelter system to find out if permanent supportive housing is available in your areas.

Permanent Supportive Housing is based on a Housing First philosophy, an approach that assumes that people are much more likely to become stable, contributing members of society when they have a safe, affordable place to live.

The Housing First approach works by providing safe, affordable housing coupled with supportive services (internal programs and external community resources) tailored to meet each individual’s needs. Residents are strongly encouraged to participate. Activities include:

  • Collaborative team meetings
  • Assessment and referral
  • Case management
  • Life skills training (nutrition, stress management)
  • Education enrichment (GED)
  • Health care education
  • Crisis intervention
  • Recovery support
  • Benefits and financial management assistance
  • Workforce readiness training: volunteer, workforce readiness, supported employment, employment services
  • Joint property management and services apartment inspections
  • Housing retention/eviction prevention planning

If your loved one lives at home, remember: Everyone at home has rights.  Try to keep that balanced with any special considerations for the loved one.

At the same time, be realistic in your expectations about the loved one’s behavior. Have a short list of clear house rules:  No smoking in bed.  No loud television or music after 11 p.m. No violence. Use appropriate consequences when rules are broken.

Keep things as predictable as possible. You and your loved one need to get out of the house at different times and have separate activities.

7. Have successful visits.

If your loved one lives elsewhere, you can have regular visits. A shorter visit can be better than one that’s too long. Be sure to communicate love and compassion.

Stay no longer than an hour if your loved one is in a hospital or locked facility. Do not “overprogram” your visit, so you can have some quiet time with your loved one.

Tie visits to your house to behavior. If your loved one is at your house for a day or longer, continue your normal routine.

8. Make activities together enjoyable.

Please keep in mind that sometimes you can’t make the activities enjoyable, particularly if your loved one is severely depressed or psychotic.  If this is the case, the best thing to do is to make sure your loved one knows that you love them and encourage them to continue treatment.

Many times you can have activities with loved ones.  People with mental illness are uncomfortable with unstructured time when there are no activities and people are making small talk. It’s better to find a common interest to base an activity on:  sports, movies, a game, walking together in a park, or visiting a place that interests you both.

Begin slowly and build, if you haven’t been doing this. I try to schedule an outing once every three weeks.  This is in addition to two visits to the house per week.

The six rules for these activities are:

  1. Be realistic about what your loved one can and cannot do.
  2. Have a specific, prearranged plan for the activity.
  3. Avoid surprises.
  4. Have a contingency plan for what you will do if things go badly.
  5. Give your loved one a specific task to focus on.
  6. Accept the fact that your loved one may not be well enough that day to do the activity.

What does “be realistic” mean?

  • Know what your loved one can tolerate in terms of travel time, number of people involved, amount of loud noise and stimulation, etc.
  • Know what you can tolerate in terms of what embarrasses you, how much time you can spend together, etc.
  • Be willing to cancel if your loved one is not doing well.
  • Go where people would be more accepting of your loved one’s behavior (a family-style restaurant vs. a more formal restaurant, the zoo rather than an art museum if your loved one is loud)
  • Don’t expect perfect behavior.

When you are having a get-together in your house with family and/or close friends:

  • Again, be realistic.
  • Assign your loved one a specific task to do, if possible.
  • Tell others in advance what your loved one’s needs are, if you feel comfortable.
  • Allow your loved one to leave or take breaks as needed.

Do you have any other advice for balancing family needs? I’d love to hear it!

mother balancing child on her legs
by karentwinem

Balancing Family Needs

The information below comes from the World Federation for Mental Health and the University of Illinois Counseling Center.

Having a family member with a mental illness impacts the entire family. Feeling helpless? You can make things better when you take positive steps to balance your family’s needs. This makes life better for everyone involved.

You’ll find that you are not in an unusual situation. In fact, any kind of chronic or serious illness, particularly when it strikes a child, impacts an entire family. How? For example, many parents feel more protective of the child who is ill. They may spend more time with that child than they do with their other children. This can make the other children feel left out and less important.

Not only that, the limitations of the ill person and the demands of their care changes the home’s daily routines. Family members find themselves sharing caregiving … or resenting those who don’t help. Fights over what to do next are common.

Family members often experience very strong emotions, including guilt, anger, fear, sadness, anxiety and depression. This, unfortunately, is a normal reaction to stress. So families have to work together to build a sense of “normal” life. This is good for everyone, including the ill person.

Challenges Increase With Mental Illness

It’s no surprise that the challenges increase when a family member has a mental illness. The additional stresses of instability and unpredictability add to the strain.

Family roles can become confused, especially if children find themselves taking on the responsibility of caring for their parents or siblings. Children in this situation often do not get the nurturing that they need.

The stigma of mental illness always makes things worse. Family members may feel too ashamed to talk about their situation. They may withdraw from relatives and friends, feeling ever more isolated and alone.

What Can Go Wrong

Without positive intervention, “well” family members can develop all kinds of difficulties:

Relationship problems

  • Trouble initiating relationships
  • Difficulty in romantic relationships
  • Issues with maintaining friendships
  • Difficulty with trusting self and others
  • Difficulty with balancing the level of intimacy, such as being either excessively dependent or excessively avoidant
  • Inability to balance taking care of self and taking care of others

Emotional issues

  • Guilt and resentment
  • Shame or embarrassment
  • Depression
  • Fear of inheriting a family member’s mental illness
  • Fear of discovery by one’s partner and friends
  • Angry outbursts or repressed anger
  • Inability to deal with life unless it is chaotic or in crisis
  • Becoming overly responsible or irresponsible in many areas of life such as commitments, money, alcohol, relationships, etc.
  • Self defeating thoughts, attitudes, and behaviors such as “My needs don’t matter. I’m not worth much. It’s no use trying.”
  • A tendency to equate achievement with worth as a person, such as: ”Maybe I can matter if I can excel at something, be perfect in school, my job, my relationships. But if I fail, I’m worthless and terrible.”

You can see why taking proactive steps to balance the needs in your family is so important. Next time, we will talk about some practical ways to do that.

mother comforting child
by karentwinem

Impact of Mental Illness on Children

The following information is from NAMI Baltimore, NAMI Vermont, “Stop Walking on Eggshells” by Paul T. Mason MS and Randi Kreger, “When Someone You Love Has a Mental Illness” by Rebecca Woolis, MFT, “The Complete Family Guide to Schizophrenia” by Kim T. Mueser and Susan Gingerich, and my own experience.

Let’s start with the bad news. When your family is dealing with a mental illness, the situation impacts young family members the most. This is true whether the children are the offspring or the siblings of the ill person. They are the most vulnerable because they have more limited coping skills and are more dependent on others.

NAMI’s research with adult siblings and adult children found that the younger the family member, the greater the potential impact. If the mental illness delays or disrupts early developmental milestones, the complications can go on for a lifetime.

“When Someone You Love Has a Mental Illness” says the worst times for children are at the onset of the illness, during the child’s adolescence and during bad episodes.

The Worst Case Scenario

Young children may become enveloped in their relative’s psychotic system with lifelong consequences. They may feel that their own needs are not important.  They may grow up too quickly. They may assume a parental role in the family.

Siblings and offspring may have “survivor’s syndrome,” feeling guilty that they were spared the illness. They also may have negative impacts on their academic and social relationships, being reluctant to bring people to the home.

As adults, these children may develop:

  • Problems with self-esteem that leaves them more dependent on the approval of others.
  • Perfectionism and the strong need for control to compensate for their chaotic upbringing.
  • Worry about their own mental health and the mental health of their children.
  • A feeling of social alienation and isolation.
  • Inappropriate caregiving in close relationships (co-dependency).
  • Reluctance to make long-term commitments.
  • May enter an early marriage to get away from the home environment.
  • Posttraumatic symptoms including heightened fear and anxiety, intrusive flashbacks, emotional numbing, etc.

When they become adults, the children may have these feelings:

  • Concern about caregiving for the relative (94%)
  • Difficulty balancing family and personal needs (81%)
  • Feeling their own needs were not met (79%)
  • Feelings of helplessness and hopelessness (75%)
  • Guilt feelings (74%)
  • Psychic numbing (70%)
  • Problems trusting (69%)
  • Problems with intimacy (69%)
  • A sense of growing up too fast (67%)
  • Depression (66%)

The Good News

Ultimately, most children in this situation grow into resilient adults. They usually do have intense feelings of anguish and loss. But they are survivors.

These children need three things to become survivors:

  1. Information about mental illness and its meaning to the family. (Naming and taming)
  2. Skills to cope with mental illness and its impact on their lives.
  3. Support, including recognition that their needs and desires matter.

You can help them when you:

  • Strengthen and support the family system as a unit.
  • Reach out to the children to listen to them. Encourage them to ask questions and share their feelings. Tell them they are not to blame.
  • Encourage their parents to get the child into therapy. Play therapy may help very young children. Older children may benefit from individual or group therapy.
  • Reassure them that their needs matter and that you will support them in achieving their goals.

Helping Offspring of People With Mental Illness

Most children of people with mental illness will not develop the illness themselves. But they do not come through the situation unscathed. Studies indicate that having a well parent in the mix or a sustaining sibling relationship reduces the stress.

Many offspring are late bloomers because their development was placed on hold. Many talk about how weird it feels to “outgrow” a parent … to have their own maturity advance beyond the parent’s maturity.

As a parent, grandparent or other relative, you should increase your time and build a strong relationship with the child. What you say doesn’t matter as much as what you do. The child will learn about detachment, self-care, limit setting etc. from you. You can learn coping skills together as a family.

To get there, try to make an alliance with the ill parent. Tell them often that you know that they love their child and want to be a good parent.

At the same time, take steps to ensure the safety of the child at all times. When the illness is severe, it’s often best to not allow the ill parent to take care of the child.

Tell the child what illness the parent has, its symptoms and prognosis in an age-appropriate way. It is frightening to not know what is happening.

Listen to the child without judgment. Assure the child that all his feelings are valid and okay. Give the child frequent opportunities to discuss fears, questions and concerns.

Make reading material available, but don’t push. Just leave the material out for an older child to read when ready.

Create opportunities for the family to be “normal,” such as outings, holidays or vacations. Let the child know that it’s OK to have fun. Of course, make sure the family is represented at the child’s important occasions (recitals, graduations, etc.) Offer physical affection regularly, and foster a sense of humor.

Try to make sure that the child has an appropriate level of responsibility. Don’t allow them to become the parent in the home.

Help the child understand that they are in no way responsible for the illness, its symptoms, its severity. They can’t fix it by being extra good.

When the parent is hospitalized, give the child the option to visit them in the hospital. If they want to, prepare them about what to expect and talk about it afterwards. You also can give an older child the opportunity to privately talk to their parent’s doctor to ask questions.

Helping Siblings of People With Mental Illness

Sibling loss is normally intense. It resurfaces at every developmental milestone. Many say they feel invisible in the family once a sibling gets mental illness. They see the stress on their parents, and they don’t want to add to it.

Siblings also commonly have anxiety about developing the illness. Surveys conducted with siblings in young adulthood also find they have two questions on their minds: “What is going to happen to my sibling?” and “What will be expected of me when my parents are not able to care for my sibling anymore?”

Some ways to support siblings include:

  • Encourage them to go to therapy, which they are be open about their feelings.
  • Support them when they feel they must step out of the family problem.
  • Empathize when they are torn between helping their parents and their ill sibling and moving their own lives along.
  • Listen to them when they talk about survivor’s guilt. (It’s at its worst in the 20s.)
  • Be open about the future when parents are not able to care for the sibling. Involve the sibling in creating options for future care.

Mental illness impacts the whole family, but you can mitigate the problems if you are intentional about dealing with them.

broken wedding ring
by karentwinem

When Your Spouse Has a Mental Illness

Mental illness is very hard on marriage. I know. I’ve been there. My first husband had a diagnosis of atypical psychosis, and our final years of marriage were filled with escalating abuse.

The stress can and does reach crisis levels. This includes the practical burdens of day-to-day problems as well as the emotional consequences of the illness. Some couples fall into pattern where managing the illness is the central part of the relationship. You become primarily patient and caregiver, not husband and wife.

The core of the emotional burden is an ongoing grieving process: mourning for the individual who has the illness and for the family life … present and future … that has changed.

Despite this, some do maintain healthy relationships.

Impact on a Marriage

Note: The following information came from verywellmind.com and “Stop Walking on Eggshells” by Paul T. Mason, MS, and Randi Kreger. The research study referenced is “Love and Mental Illness: A Survey of Psychological Well-Being and Intimate Partnerships,” published in PsychGuides.com (from American Addiction Centers) in January 2019. I also include my own thoughts from my experience.

It starts with finding out what is happening. The 2019 study by PsychGuides.com found that men tend to wait longer to disclose their mental illness diagnosis than women do. It found that 73.5% of woman tell their partners about the diagnosis, while only 52% of men do.

A new diagnosis of mental illness can be devastating, embarrassing and even frightening. Due to the problems of stigma, sufferers worry that you may not love or desire them anymore. They fear divorce. And, in situations of violence, separation and divorce may be the best answer. (This happened to me in my first marriage, and the church agreed it was best under the circumstances.) This is a decision that takes much prayer, and we’ll go over some questions to ponder below.

In meantime, understand that a negative reaction from you can potentially exacerbate symptoms of the mental illness and bring on additional feelings of hopelessness. So, if you can, let your spouse know that you are there for and love them “in sickness and in health.”

Steps to Take When Your Spouse Is Diagnosed

Educate yourself.

  • Seek out high-quality psychological and medical professionals. Find literature and online information about the particular diagnosis from legitimate sources only. Websites that you rely on should have good reputations or come recommended by your psychotherapist or physician.
  • Understand that issues that you think of as “character flaws” might be symptoms.
  • Effective treatment combining therapy and medication is crucial. Mental health professionals can also educate you about what role you can and should play in your spouse’s treatment plan.

Do not become their therapist or enabler.

  • Let the professionals outside your marriage do their jobs with your spouse. Your role is to provide love, support, and sympathy for your partner during their recovery efforts.
  • You don’t want to do things for your spouse that they can do for themselves. How involved you should be depends on how ill your spouse is.

Seek individual and couples counseling.

  • Spouses of people with a mental health condition can feel hate, frustration and anger. Emotional exhaustion is not unusual. Individual counseling can help you.
    • It’s normal to be angry if your spouse is not trying to manage their illness. You may feel yourself acting as a parent/caregiver in the situation. This can damage you and your relationship.
    • Your own therapist can help you talk through decisions about boundaries issues. Your spouse’s ability to take care of themselves will change along the continuum of care. Your therapist can help you to be strong, yet flexible.
    • If your spouse continues to refuse treatment, you can work with your own therapist to decide key issues, such as:
      • Should I use our marriage and the children as leverage to get my spouse to get help?  (As in:  You get treatment or we’re leaving you.)
      • Is this situation dangerous? Should I leave with the children?
    • Mental illness also changes the relationship with your in-laws. A counselor can help you with this.
  • Couples counseling can prevent the two of you from falling further into an unhealthy relationship. (For example, it’s easy to blame everything that’s wrong in the relationship on the mental illness.)
    • Couples counseling can help with sexual intimacy issues as well, which are common when a spouse has a mental illness.
    • Financial stresses are common when one spouse has a mental illness. Couples counseling is a good place to discuss the situation.
    • This setting is also a good place to discuss specifics about child care.  Should you leave your children with your spouse while you work?
  • Stay active in a support group.
    • You get to hear lived experience from others who have been in your situation.
    • You can talk through issues.
    • You can also help others as they help you.

Practice self-care regularly.

  • Self-care is necessary if you have a spouse with mental health problems. If you don’t focus on your own health, you may be sucked into the vortex of the mental illness, putting your marriage at risk.
  • Go back to the basics: Get enough sleep. Do some regular physical activity. Eat well. Spend time with friends or loved ones. Engage in activities or hobbies that you enjoy.
  • Watch out for compassion fatigue and burn-out. This is a common scenario when dealing with an ill or disabled partner.
  • Ask yourself if you are responding well to this new scenario, and to other challenges in your life. Are you stepping up in a way you that you are proud of or are you avoiding doing your part to help your spouse, your family, your marriage, and yourself?

Deciding to Stay or Go

This is a tough decision. Sometimes your family, especially your parents, may see things more clearly than you do. I remember when my husband’s therapist told me “I think you need help to become strong enough to leave this marriage.” It was a shock to me, but not to my father.

Here are some questions to consider:

  • Am I in physical danger?  Are the children in danger?
  • Have I accepted the fact that my spouse is the one who decides about treatment?
  • How would a separation impact the children?
  • How does this marriage affect me?
  • If a friend were in my place, what would I say to them?

Having a spouse with a mental illness can be a heavy cross to carry. But, remember, with treatment 60% to 80% of people with mental illness improve their behaviors. You can have hope, but may have to be practical in the moment.

content woman
by karentwinem

How to Feel Content … No Matter What

I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well feed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.

Philippines 4: 11-13

Is it possible to have contentment … a peace separate from our circumstances … when we are loving someone who is mentally ill?  Especially when it is a spouse and your whole life is upside down?  When it is a child and their prospects are damaged and our daily lives are so changed? Or it is a parent and you have to parent them?

Look again at what Paul says:  “I have learned the secret of being content.”  Contentment can be learned with God’s grace. 

In fact, Paul had to learn it.  Paul did not have an easy life.  Here’s what Paul says about his line in 2 Corinthians 11: 23-29. 

23 Are they servants of Christ? (I am out of my mind to talk like this.) I am more. I have worked much harder, been in prison more frequently, been flogged more severely, and been exposed to death again and again. 24 Five times I received from the Jews the forty lashes minus one.25 Three times I was beaten with rods, once I was pelted with stones, three times I was shipwrecked, I spent a night and a day in the open sea, 26 I have been constantly on the move. I have been in danger from rivers, in danger from bandits, in danger from my fellow Jews, in danger from Gentiles; in danger in the city, in danger in the country, in danger at sea; and in danger from false believers. 27 I have labored and toiled and have often gone without sleep; I have known hunger and thirst and have often gone without food; I have been cold and naked. 28 Besides everything else, I face daily the pressure of my concern for all the churches. 29 Who is weak, and I do not feel weak? Who is led into sin, and I do not inwardly burn?

We don’t have Paul’s problems, but we don’t have easy lives either. To top it off, we live in a culture that wants us to be discontented. For many years, the marketers wanted us to be discontent. Now the marketers, the politicians and our neighbors with anti-everything yard signs want us to be discontent.

We already can feel like we got robbed. We see other people with normal kids, normal spouses, normal parents and a normal life. We feel envy. And we may think that God must have been looking the other way when our loved ones got sick. Or that God doesn’t love us as much as He loves everyone else.

Yes, most of us have head knowledge … Bible knowledge … that the source and strength of all contentment is God himself. Contentment is both a God-given grace and something we can learn. It’s not a denial of suffering or injustice. It’s an inner condition of our hearts that is cultivated over time. Let’s look at what contentment is and what it is not.

What Contentment Is

True contentment is inner peace and calmness. If you look calm on the outside, but you’re a frantic basket case on the inside, you’re not content.

To be content, you have to feel the pain of your suffering. God uses this to help us find contentment in Jesus. So, in an odd way, you have feel enormous discontent to get to the point where you learn to be feel content.

Contentment comes from within. You can’t distract your situation away. Or commit sin (such as sinking into substance abuse of one kind or another) to avoid it.

My church’s founding pastor Rich Nathan gave a sermon in 2004 that offered a three-part plan to develop contentment that I can’t improve on at all. 

Three Steps to Contentment

No. 1:  Acknowledge God’s sovereignty over your life. Practice surrender.

The Bible teaches that everything, even our loved one’s illnesses, have to pass through God’s hands before they happen. As Elisabeth Elliott put it: “Whatever happens is assigned.”

God’s power is unlimited, and he rules all our lives.

Matthew 10:29-30:  Jesus says, “Are not two sparrows sold for a penny?  And yet not one of them will fall to the ground apart from your Father.  The very hairs on your head are all numbered.”

Romans 8:28: “And we know that in all things God works for the good of those who live him, who have been called according to his purpose.”  We will never suffer trials unless God allows them and watches over them.

The most important example of a person who trusted God under terrible circumstances was Jesus himself.  Have we ever been in so much agony that we sweat blood over it?  Yes, Jesus understands how we feel.

And we learn things from suffering that we probably couldn’t learn anywhere else: reliance on grace, humility, perseverance, quality prayer, faith, trust, a real relationship with God.

Rich suggested that we engage in a spiritual exercise when we are upset about our life situation. That we say:  Just for today, I choose to believe that you are in control of my life. Just for today, I will choose to trust that you know what is best for me and for the kingdom. Like Joseph, I’m going to say that others may have intended what happened to me for evil, but you intended it for good.  You are good. Your will is good.

No. 2:  Practice thanksgiving.

Start being grateful for the littlest things:  grass, sky, trees.  Spend a day looking for things to be grateful for.

No. 3: Practice abiding.

This means that you connect with God’s person.  You can do all things through God who strengthens you, but you have to abide in God to do so.

Pastor Rich encouraged us to:

Breathe in the presence of God. Welcome the Holy Spirit into areas that you’ve been grumbling about in the past, areas where you are discontented, areas where you are frustrated. Invite the person of the Holy Spirit to come into that part of your life.

Accept God’s sovereignty.  Offer thanksgiving. Invite God into your situations and abide with him. Contentment will come.

handling bizarre behavior and anger in people with mental illness
by karentwinem

Handling Anger, Bizarre Behavior and Negative Symptoms

Information is from “When Someone You Love has a Mental Illness” by Rebecca Woolis, “The Complete Family Guide to Schizophrenia” by Dr. Kim T. Mueser and Susan Gingerich, and the Palo Alto Medical Foundation.

The best answers for how to respond to the symptoms of your loved one’s mental illness come from their treatment team. As I’ve said previously in this series, I’ve found it can be hard to get answers from the team quickly. This information below is from respected sources and my own experience to help when you need to respond immediately.

Responding to Anger

First, if you are angry or upset at your loved one, separate until you can calm down. To deal with their anger, you need to remain as calm as you can, and stay in control of yourself. When your loved one is angry:

  • Do not approach or touch your loved one without permission.
  • Give your loved one an escape route out of the situation.
  • Don’t give into angry demands that violate your boundaries.
  • Do not argue with irrational thinking.
  • Acknowledge the person’s feelings.
  • Protect yourself from injury.

If necessary, call the police and ask for an officer trained in dealing with the mentally ill. More cities are creating special units that include social workers and EMTs to respond to mental health crisis calls. This is excellent news, and I hope the trend continues.

If angry outbursts become routine, you need to discuss this when everyone is calm and can agree to some steps.  This could include:

  • A medication review
  • Venting energy via exercises, such as hitting a punching bag or yelling in a place where it won’t bother anyone.

Dealing with Bizarre Behavior

Bizarre behavior is a symptom and is often related to delusions. This can include strange rituals and OCD-like activity and unusual beliefs acted out.

If the behavior is harmless, you can ignore it if you wish.  (For example, if your loved one can’t go get ice cream because everyone can read his mind at Graeter’s). Focus on positive behavior, and ignore bizarre behavior.

If it constitutes a problem (running around the neighborhood naked, doing dangerous things, damaging property, etc.), you can ask the person to stop.  They may or may not be able to do this.

Focus on the consequences.  Tell the loved one that the behavior may end up with them being in jail or the hospital.  You can remind them of previous experience, if applicable.

If necessary, you may need to call 911 and ask for an officer trained in dealing with the mentally ill.

Dealing with Negative Symptoms

Blunted Affect is a facial expression that’s almost blank and conveys no emotion.  The person still feels emotions, but they don’t show them. Ask how they are feeling.

Poverty of Speech means that the person barely speaks. The person cannot help this.  Do things together where the focus is not on talking: shopping, nature walks, movies.

Apathy and Anhedonia are when your loved one no longer enjoys activities or things. Apathy is a symptom, and not under the person’s control.  At the core of this is a belief that activities will not be fun.

  • Acceptance is the first step. “I know he’s doing the best he can.”  “He’s not lazy; this is a symptom of his illness.” “Difficulty doing things and following through are part of this illness.”
  • Invite the loved one to join you in day-to-day activities (grocery shopping, going to the dry cleaner, etc.).
  • Regularly schedule enjoyable activities (going to a museum, going to get pizza, going to a park).  Lower your expectations.
  • Take baby steps and praise progress.
  • Increase daily structure. 
  • Focus on the future, not the past.

I hope this series on dealing with symptoms has been helpful. Please let me know what topics you’d like me to cover in the future.