Hands down, the most difficult aspect of being a mom is watching my kids suffer. This is especially true of my third son who has battled a serious mental illness for the past 10 years. He fights a continuous onslaught of negative and confusing thoughts. Daily, he must work to interpret reality from delusion. It is heart wrenching to watch and I can’t begin to imagine what that is like for him!
On March 11, 2020 our Governor announced a State of Emergency due to the COVID-19 pandemic. I panicked as I imagined what this could mean for my son in a group home setting. So, I went into what I call “nurse-mom” mode. I made arrangements with his doctor for telephone appointments, adjusted ACT team visits so that case managers would not be coming in and out of his home, and I prepared my son for the new reality of not being able to go on our weekly outings that include shopping, eating at restaurants, church, and family time in our home. It was daunting and I feared the worst for him. Here are a couple of the lessons I’ve learned since those early weeks:
My son is stronger than I realized.
I tend to fear and prepare for the worst when it comes to assisting my son. I’m never so glad as when he proves me wrong. While it was definitely an abrupt change to his routine, which comprised of a temporary furlough from his part time job and having no visitors in his home, he was a true rock star. I rarely heard him complain. His nights and days were all mixed up and FaceTime became our new hangout. The men at his home were stuck inside too. Arizona’s desert heat began to edge up toward triple digits with each passing week and all of the day programs they relied on for socialization were shut down. As I type this, not too much has changed except now our son visits us in our home and the only outings include trips to the grocery store and drive thru Starbucks.
The point is, he made it. And so did the other men. We aren’t out of the woods yet, but I see my son in a new light. He stepped up to the challenge and even took responsibility in ways that he just hadn’t had the opportunity to do before the pandemic hit.
My son is more isolated than I realized.
I’m sure that doesn’t make sense in light of what I just wrote. As I mentioned, he rarely complains. And sometimes, that is exactly the problem. It makes it all the more challenging as my husband and I seek to care for our son while honoring his preferences at the same time.
As the lockdown restrictions began to ease, my husband and I discussed purchasing a new bed for our son’s room as his current one was too small and several years old. My son, who towers over 6 feet, insisted that his standard twin sized bed was just fine and asked that we not get him a new one. Ultimately, we decided to go ahead and purchase a new larger bed and mattress. When he was at work one weekend, we snuck into his room to set it up and surprise him. Needless to say, he was thrilled to walk into his room and find a larger more comfortable bed. He continues to express his gratitude.
While this story doesn’t describe a national emergency by any stretch of the imagination, it does illustrate a challenging category as it relates to providing assistance for people with more chronic forms of serious mental illness. The reason we knew about our son’s need isn’t because he asked for a new bed. We knew that he would enjoy the new bed, despite his objections, because we have a relationship with him. We know his patterns, we are always learning about his strengths, and we recognize his limitations. But what about those individuals who do not have relationships with families or friends?
More than cigarettes and managed care.
The majority of people who live with serious mental illnesses like Schizophrenia smoke cigarettes. As a mom, I really struggle with the fact that my son smokes. Yet, I recognize that there are only so many battles I am equipped to fight. I’ve learned that as people with Schizophrenia are puffing relentlessly on that cigarette, they experience a temporary peace from the fighting that is raging in their minds. With so little respite and enjoyment in the every day moments of life, smoking takes it’s seat as an enticing reprieve.
Recently I dropped my son off at his group home after he spent the weekend with us. The temperature was well above 100 degrees and yet one of his housemates was waiting in the front yard. True to form, my generous son immediately offered up 3 of his newly purchased cigarettes to his friend as I quietly chided walking up to the front door beside him, “hey, you know those cigarettes are awfully expensive son.” Without hesitation, he turned to me with an admonishment, “Mom, do you know what it’s like for a man to be stuck inside a home day after day with nothing to do?”
My heart sank as it often does when I’m hit square by the limitations of our current managed care behavioral health system. There are a few people who have serious mental illness that make it into a home like my son has, but I know from experience that it’s just not enough. We’ve adopted, even boast about, a system of care that is recovery and independence oriented. We decided as a country in 1963 to move people with severe mental limitations into the community. And we did just that. They live in a few scattered homes with varying levels of managed support, or shelters, or prisons in our communities. What haunts my husband and I is the question, “are they really a part of our communities?”
What can we do?
I get a general sense that most people I speak with want to “do something” about helping our seriously mentally ill neighbors. We see the people on our streets and we donate to homeless shelters or offer to volunteer and pass out food. These are good and obvious ways to respond, but how do we think about and move forward in terms of addressing the more daunting issue of isolation? It would be too easy for me to write about this then ask you to give money to our organization. It is certainly one part of the answer and very much needed and appreciated. However, I would like to invite you to give something now in terms of careful reflection for just a few moments over the following suggestions.
Devote yourself to a local, Bible believing, gospel preaching church. I bet you weren’t expecting me to write that. If you are looking for a charitable endeavor, or something to make yourself feel good, ease your guilt, earn your way to heaven, anything along those lines apart from the grace of God’s gift of salvation in your life, then you will burn out really quick and your motives will be mixed at best. I’m not saying that unbelievers don’t do good things and have an impact on others. I have learned from and greatly admire my fellow advocates who do not profess a believing faith. It’s my privilege to continue working along side of many extraordinary people who have done amazing work.
But relationship building takes time and is never so sustained over the long haul except by being tethered to the anchor of a genuine faith in Jesus Christ and a solid local church.
See your need first. Be a part of a community of believers. Be known by, and share burdens with, other Christians.
Take time to pray and think deeply about how to build Crisis Care into the fabric of your church. Serving others is a response to the grace that has been given to us by God in Jesus Christ. Not the other way around. It’s not about me and it’s not about you. Be devoted to what is most important, guard that with all of your heart. At the same time keep looking for expressions to offer care to those who are on the margins and hurting in our communities and churches.
Our organization offers Crisis Care training for churches, but it’s not a one size fits all program. It takes heart, persistence, and a willingness to get into the mess of relationships. It’s wonderful, it’s humbling. But it takes time and grit. Count the cost, have an ongoing dialogue with God and your pastors, then roll up your sleeves.
If you have a heart for people who struggle, consider starting a Caregiver Support Group in your church. Along side of Crisis Care, we are developing a template for Caregiver Support Groups. Again, not a program but an opportunity to serve others and build relationships with people who need support in our communities. It’s also an opportunity to freely discuss the hope that God offers us, even in the midst of immense suffering, that is found in the Bible.
People who are experiencing the effects of serious mental illness are bearing incredible burdens. If we only offer them temporary help, but do not speak about the eternal consequences that await us apart from the hope that Jesus Christ has won, then to me it’s like offering someone a drink of water right before they step off the edge of the Grand Canyon.
But there is hope. Let’s tell people about it.
If you are a business owner, consider hiring someone with serious mental illness. I mentioned above that my son has a part time job. This came about through relationships within our local church. However, I had never personally met my son’s current employer. He hired him, he had a general sense that my son had a disability, but he treated him like everyone else. That’s it. He gave my son a chance and he’s been working there for almost two years now. Nothing has given him a sense of purpose like having meaningful work.
If you cannot hire someone, consider learning more and supporting our efforts to pass a tax incentive bill for employers to hire people with serious mental illness in our state. Even better, support businesses who do employ people with disabilities like Fire & Brimstone in Gilbert, Arizona.
Ok, now I’m going to ask you to give. Over the next month we will begin to roll out our intentions for purchasing a home so that we can support men with serious mental illness. I know, I know. We are in the midst of a pandemic and economic uncertainty. Why would we decide to tackle this now? Well, there just really isn’t any time that feels like the right time is there? So, we are going to do it anyway.
We know it’s an audacious goal.
So please, prayerfully consider how you can be audacious along with us.