exhausted caregiver

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

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

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

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

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

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

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.

Handling Symptoms: Hypomania and Agitation

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.

I’ve found that it’s difficult to get immediate response from my loved one’s treatment team or anyone else when my loved one is dealing with symptoms of mental illness. My first response is to call them. While I’m waiting for a response, I’ve found this advice from the sources above useful.

Responding to Hypomania

Mania and mixed states are a medical emergency, so medical help is needed. If you can’t get a response from the treatment team, consider going to the emergency room or a psychiatric emergency room.

Hypomania can be a common symptom, which your loved one may have to live with repeatedly.

The best advice for those who love them: Don’t take the symptoms personally.  When in the midst of a bipolar episode, people often say or do things that are hurtful or embarrassing. When manic, your loved one may be reckless, cruel, critical and aggressive. Try to remember that the behaviors are symptoms of your loved one’s mental illness, not the result of selfishness or immaturity.

Be prepared for destructive behaviors.  When your loved one is well, negotiate a treatment contract that gives you advance approval for protecting them when symptoms flare up. Agree on specific steps you’ll take, such as removing credit cards or car keys, going together to the doctor, or taking charge of household finances.

Spend time with the person. People who are hypomanic often feel isolated from other people. Spending even short periods of time with them helps. If your loved one has a lot of energy, walk together. This allows your loved one to keep on the move but still share your company.

Avoid intense conversation and arguments.

Prepare easy-to-eat foods and drinks. It’s difficult for your loved one to sit down to a meal during periods of high energy, so try offering them peanut butter and jelly sandwiches, apples, cheese crackers, and juices, for example.

Keep surroundings as quiet as possible. Avoid subjecting your loved one to a lot of activity and stimulation. 

Allow your loved one to sleep whenever possible. During periods of high energy, sleeping is difficult, but short naps throughout the day can help.

Responding to Agitation

Decreasing stimulation can reduce agitation.  You can encourage your loved one to try relaxation exercises, deep breathing or blocking sound using ear plugs.

Responding to Disorganized Speech

Speaking in gibberish is a frightening thing to observe. If you can’t get ahold of the treatment team quickly, you may want to go to the emergency room or the psychiatric emergency room.

Your job is to communicate that you care.  Respond to emotional tone if you can see it.  If you sense fear, talk about how hard fear is to deal with. If you can pick out a sentence that makes sense, you can respond to that.

When one of my loved ones spoke in gibberish, I was able to pick up the tone. I did say that I couldn’t understand what they wanted, which they seemed to understand. We were in an institutional setting so I felt comfortable with this, as I could get help if the frustration spilled over into throwing things.

As I hope I’ve made clear, your treatment team is the best source of information for how to deal with the symptoms of mental illness.

Next time, we’ll discuss responding to anger, bizarre behavior and negative symptoms.

Dealing With Delusions and Hallucinations

Handling the Symptoms of Mental Illness

Note: The information is from NAMI, Mental Health America, “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. It also reflects what I have learned through personal experience.

Some questions that I have heard in our support group include:

  • “What do I say when she says someone on television is sending her secret messages?”
  • “What do I do when he gets the locks changed because he thinks the FBI is trying to get into our house?”
  • “What do I do when he disassembles the pipes to find out where the voices are coming from?”

All these questions are related to delusions and hallucinations, which are symptoms of schizophrenia, bipolar disorder (in some cases) and other forms of mental illness.

Three factors that can influence symptoms are inadequate medication, substance abuse, and high levels of stress. About half the people with schizophrenia have symptoms most or all the time, even with medication. Symptoms also can be signs of relapse coming.

Even if your loved one doesn’t have these symptoms, you may be called on to give advice at some point.  Of course, we always point people to the experts.  But it can be hard to get solid advice from a visit to a psychiatrist or to talk to a social worker. So I’m providing the information that I have collected and used in real-world situations as support.

Responding to Delusions and Hallucinations

People vary in their sensitivity about their delusions or hallucinations.  Previous medical history is a fairly good predictor of this. Some signs that a hallucination is taking place include when your loved one is:

  • Talking to themselves as if responding to questions or comments, but not in a conversational way, such as: “Where did I put my purse?”
  • Staring into space, or being distracted or preoccupied.
  • Laughing for no apparent reason.
  • Appearing to see something that you can’t see.

Hallucinations and delusions often start out as benign, but can become more troubling over time.

People can learn to deal with hallucinations through therapy (including cognitive behavioral therapy), medication, ignoring the hallucination, telling the voices to leave them alone or playing music loudly. Shifting attention to music or television can help.  Working toward acceptance through prayer also helps.

Principles to Keep in Mind

When you are dealing with a loved one who seems delusional or may be having auditory or visual hallucinations, there are some basic principles to keep in mind.

While the things they say that they see, hear or believe are not apparent to you and may not make sense, they are very real to that person. They actually hear voices and see images.  They believe the things they are telling you. Do not dismiss or minimize the impact of this. Do not get into an argument about whether the voices are real.

Research shows that confronting people about their delusions may result in an initial decrease of belief in them, followed by a rebound that makes the belief in the delusion stronger.  This discredits you. If you are forced to take a stand on this situation, just say that you know the experience is true for them.

People, particularly those who have been in treatment for some time, may not be entirely convinced that the delusion or hallucination is true.  They know that this can be a symptom of their illness.  If they check with you to see if what they are seeing or hearing is true, you can tell them that it is likely that this is a trick that their mind is playing or whatever term is comfortable for them.

Respond to the Emotional State

A variety of emotional states accompany delusions and hallucinations, ranging from pleasure to terror. It’s more important to respond to the emotional state you detect than to the content of the delusion or hallucination.  Use listening skills like paraphrasing and asking clarifying questions to reflect what you hear. Ask: “What can I do to help you feel safe?”

You can ask if the person is seeing or hearing something. Try to get enough information to determine how they are feeling and focus on that.

Do not make fun of the person or try to have a lengthy conversation about the content of the hallucination.

Keep in mind that your statements may be confusing to the person as well.  If a voice is saying that you are going to kill him, and you are saying everything is fine.  You see the problem.

This is the first of a series on handling the symptoms of mental illness with your loved one. Next time: responding to agitation and hypomania. As always, if you can get advice from the medical team treating your loved one, use that advice instead.

upset parent

Ten Things to Do When You Fear a Relapse

Because mental illness is often episodic, our loved ones can slide into relapses. You also may hear professionals say your loved one is “decompensating.” Many relapses in major mental illness happen when our loved one stops medication, experiences stress, or abuses alcohol or drugs.

When you see your loved one’s particular set of warning signs, you can take these 10 steps. NAMI, Mental Health America and my own family’s experiences provided resources to create this list.

Ten Steps to Take

  1. Meet as a family to discuss the concerns as soon as possible.  When it’s possible, include the ill person. Explain to him why you are concerned. Describe the specific changes you see in behavior and for how long. Reach a consensus about whether you have a problem or not.
  2. Find out whether the person has been taking medication.Start checking as soon as you see the warning signs if you don’t check every day. If the person lives with you, you can count the pills in their medication bottles daily. If the person has stopped taking medication, talk to them about how to improve compliance. They may agree to increased monitoring or receiving reminders. Notify the treatment team if they have stopped taking medication altogether and won’t resume it.
  3. Determine whether your relative has been abusing drugs and/or alcohol. Check for evidence. Remove alcohol and drugs from the house. This is another topic to discuss with the treatment team.
  4. Evaluate your relative’s stress level. What happened just before these changes happened? Do you see any trigger events?
    • Has he experienced a recent life event that’s stressful?
    • Has there been a significant change in routine over the last two weeks or so?
    • Has there been a change in the treatment plan or team?
    • Have there been conflicts with family, friends, coworkers or others?
    • Has there been a change in an important relationship?
    • Has there been an increase in responsibilities?
    • Did he stop participating in activities he enjoyed?
  5. Check current behavior and circumstances against your loved one’s relapse signature. (The information about that is here.
  6. Some classic trigger events are:
    • Staying up too late or all night.
    • Loss or grief.
    • Conflict among loved ones.
    • A change in the season.
    • PMS.
  7. Ask the relative about the answers in your stress evaluation. If stress has been building, find a way to reduce it:
    • Reduce responsibilities.
    • Reduce work or school hours.
    • Add more leisure time.
    • Get or give a temporary loan to reduce money problems.
  8. Call the psychiatrist and case manager to express your concerns. Consider a medication change.
  9. Keep monitoring but try to keep life normal. Regular routines and family fun help to reduce stress for everyone involved. About all, use your toolbox of support ideas for YOU. Taking time to do things you enjoy will help you stay strong enough to be supportive when needed. When you are not feeling well, it’s easy to stop doing things that are good for you. Here are some ideas:
    • Set aside time for extra sleep.
    • Attend a peer support group.
    • Spend time in nature, like going to a park.
    • Write in a journal.
    • Spend extra time in prayer and meditation.
    • Volunteer.
    • Watch a funny movie or TV show.
  10. Help your loved one think about things to stop doing. This could include staying up late, spending time with people who are not supportive, or drinking.
  11. Check back in a few days. Evaluate the situation. Is it better? Or worse?