Caregiving for the Mentally Ill
Let’s Chat Afterglow #9
Dealing with a mentally ill family member is not easy. I know this firsthand. My sister has been struggling with mental illness since she was a child. It is very difficult to watch someone you love in so much pain. You just want to make it all better, but you can’t. Still, they need you. You are a priceless piece of their healing process, but you are not the start all end all. Don’t put that erroneous burden upon yourself. I did and it cost me parts of myself. You, as the caregiver or family member of someone who has mental illness, can be an integral part of their care plan, but you can’t forget to care for yourself. This is vital. I share my story, as the caregiver, and my sister’s story, as the care recipient, in the hopes that we can bring understanding, insight, encouragement, and peace to your situation. We’ve been through a lot and the journey continues, but “we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them” (Rom. 8:28, NLT).
I know that caring for a loved one who struggles with their mental health is not something any of us want to do, but it may be our lot in life. I don’t think enough thought and support is given to those who have to care for a family member that is difficult to care for. It can bring discord to families, destroy relationships, and break the individuals who are their main caregiver. At times it’s frustrating, maddening, and exhausting. It’s not their fault. But it’s not yours either and you didn’t ask to be in this position. It’s not fair for either one of you. However, we can’t just bury our heads in the sand and hope it will go away because it won’t. The best thing to do is confront it head on. Get help. You are not alone in this battle. One of the best support groups available is NAMI (National Alliance on Mental Health). NAMI works to educate, support, advocate, listen and lead to improve the lives of people with mental illness and their loved ones. Reach out to your local chapter. It will definitely be a positive part of your journey.
I wish I would have understood mental health and had access to the tools that are now available to us when I was a young teenager. I saw my sister, who is seven years younger than me, struggle horribly. I felt terribly alone in dealing with the situation. I didn’t know what to do for her. She was a very sensitive, fragile little girl. What I thought was her sensitively, morphed into out-of-control sadness, bouts of deep depression, paralyzing fear, and mental breakdowns that I had to fix. I thought that maybe hormones had kicked in also or the mean girls at school had gotten to her. We just didn’t know what was happening. I could usually defuse the situation and help her get through for a minute or two, but she continued to be tortured in her mind. I became her lifeline, which was a responsibility I didn’t particularly want. I had no idea she was ill. Neither did she. I just tried to play it off and deal with it because I didn’t want my parents, especially my Mom, to be worried. I also didn’t want the church to blame Wendy’s “bad” behavior on them because that is what they did. According to them, anything that had to do with anxiety, sadness, or fear that someone was struggling with was due to sin, either in the individual’s life or, in the case of dependent children, the parent’s life. There was something in me that knew Wendy couldn’t help it. It wasn’t about sin.
I started college when Wendy was 10. I was excited to be living on campus and immersing myself in the college life. I was on a quest to find myself, but I still had a little girl at home that needed me desperately. She said things that scared me and, to be honest, that guilted me. Like, “I can’t live without you with me.” “If you don’t come home this weekend, I don’t know what I’ll do.” All the while crying, sobbing, and pleading with me to come home. It was the last thing I wanted to do. I wanted to be a college student, but I came home. I felt like I had no choice. Over the course of a weekend, I could settle Wendy down a bit and prepare her for the week without me. I had to constantly reassure her that I would not let anything happen to her and that I would never leave her. Talk about pressure. She still had to call me every morning at 6:00am before her school day. 6:00AM. This seemed like cruel and unusual punishment for a college student. Every morning like clockwork, the wall phone in the dorm room would ring at 6:00am. I felt so bad for my roommate, but she was a good sport and understood the situation. I had to reassure Wendy that she could get through the day and that everything would be ok. I let her know how much I loved her and believed in her. She told me later in life that I was her prescription. However, I wasn’t enough. I feel so bad that she had to suffer like she did.
We were at a disadvantage because we didn’t know anything about mental illness except that people with mental problems were deemed crazy or put away in a mental hospital or insane asylum. I didn’t want that for her. I just wanted the madness to stop. I was hoping she would outgrow it or start enjoying life so she could move on and be a normal child. But she couldn’t. If I had only known exactly what we were dealing with, I could have gotten her the help she needed and the help I needed. I loved her with my whole being, but I wanted to live my life. I felt very much alone in all this.
As Wendy got older, she did create a little life of her own, but she was still very unhealthy. She tried to sooth her mind by working out compulsively, being with men, and partying. She became more independent and needed me less. I was relieved but always on high alert. I wanted her to be ok, but knew the hammer would drop again because nothing had really changed. She was just trying anything to get temporary comfort. She went through a couple of marriages that didn’t work out and then she found a man that she settled down with and was married to for 25 years. He became her person. Wendy had been diagnosed with OCD before she met him, but received a dual diagnoses a couple years after they were married of Bipolar and Borderline Personality Disorder. He walked her through every step. I was so thankful for him. Her psychiatrist just couldn’t seem to find the right cocktail for her, and she found little if any long-term relief. She continued to suffer, and it seemed like it was getting worse rather than better.
It was a lot for her husband to deal with, but he loved her. I understood his life and existence. I knew what it did to him, how it affected him, how weary, tired, and overwhelmed he became while losing himself in the process. He tried to do it on his own without a support team, self-care was thrown out the window, his needs went unmet, and eventually he cracked. I would get a phone call on occasion from my brother-in-law when things would get really bad; overdoses, suicide attempts, self-harm episodes, erratic behavior, etc. He, not Wendy this time, was the one on the other end of the phone crying, sobbing, yelling, hopeless, not knowing what to do, feeling like he was doing everything possible to make her well, but it wasn’t working. I truly felt for him, but I also felt for my sister. I commended him for the way he took care of my sister, but he didn’t take care of himself and his own issues. He was breaking down and her last suicide attempt was the straw that broke his back. He was done. He called me and told me about the suicide attempt and that he couldn’t do it anymore. He said when he saw her laying there, he retrieved his gun and was planning on shooting himself in the head when the police arrived. A police officer had to talk him down. He loved her, but he just couldn’t take one more day. He is one reason I am so empathetic to the caregivers of a mentally ill loved one. I will forever be grateful for him.
Wendy was admitted to a mental hospital, and I knew I would have to bring her back home to live after she was released. She lost everything in one day and it wasn’t going to be easy to help her get through this. I didn’t want it to be me again. But, who else did she have? By this time our parents were aged, my Mom doesn’t like me to use the term elderly, oh how I love that woman, and we have no other family member that could do it. But God is so faithful, and He made a way for us. “I am making a way in the wilderness and streams in the wasteland” (Isa. 43:19b, NIV). That was over 4 years ago and, I am happy to say, Wendy is better now than she has ever been, but unless God heals her supernaturally, she will always have mental health issues which means I will always have to care for her in some manner.
The truth is, most people with mental illnesses will not be cured, but they can be better. It is not our responsibility or duty to fix them because we can’t. What we can do is try to be a part of their care plan to guide them through, to listen to them, empathize with them, make sure they are taking their medications, that they aren’t self-isolating, self-medicating, or going off the rails. We can make their health care providers aware of issues. Sometimes we may have to call 9-1-1, or take them to the hospital. As desperately as we want to make them well, it is not within our power to do so, only God has that power. God has given us doctors, therapists, psychologists, psychiatrists, support groups, church families, and medications as part of the care plan. The mentally ill person also needs family and friends who love them regardless of their issues, to support them, encourage them, check in on them, and love them, not fix them. If you aren’t already, plug yourself into a support group, get involved with your local church, pick up that hobby you have laid down, take that trip you have been putting off, sign up for that class you’ve been wanting to take and, perhaps most important, cut yourself a break.
Things can get better. Wendy has really grown in the Lord since she came home, which was the missing piece that holds all the broken parts together; nothing or nobody else can do that but God. Wendy has great doctors, therapists, the right cocktail, her faith, family, and church to help her, which disperses the load that is on me, giving balance to this area of my life. She is independent and does things she had never done before, like handling her own money, balancing her checkbook, buying groceries, paying bills, having a debit card, maintaining her car, etc. However, she will always need me close by and have to be reassured that I am continually here for her. I am her FP, her favorite person. I know this will be my lot for the rest of her life or mine and I’m ok with that. I’ve accepted it. But I’m not losing myself in the process. My life means something too. Your life means something too. Don’t let being a caregiver destroy your identity. You cannot do it on your own. Get help. Call in reinforcements. You need to take care of yourself as a caregiver of someone with mental health challenges or you could be the one that breaks. Don’t feel guilty for having a life. God wants you to have a life, He wants you to live. Find the balance, create boundaries, and be healthy. “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future” (Jer. 29:11).
