When you realize that somebody you love has a mental illness, your world very quickly turns upside down and inside out. You find yourself researching, reading, educating, and teaching yourself everything you can in order to be the best caretaker or support system you can. There’s doctor appointments, re-learning how to be a parent/spouse/friend, managing school or work, running your household, trying to maintain some sense of normalcy, and attempting to find time to rest.
What you’re not told about is the effects that ripple through the life you were previously living. Before I get much further, here are some statistics to help the context of this post:
Now with this information out there, here’s what nobody tells you about mental illness. Living with or caring for a person with a mental illness takes a toll on every fiber of your being. Physically, emotionally, mentally, spiritually, and in every other quantifiable way you can imagine. Respite is available, where your child can spend a day or weekend with a family or organization in order to give parents and caretakers a break. However, it takes a letter from Congress and an act of God to qualify for any services like that. If you’re a middle-class family, you may as well forget about getting any assistance that you will undoubtedly need. Access to mental health care is still the least available form of health care in the nation.
It puts an indescribable amount of strain on your marriage, as mentioned above, but even more so when you are in a blended family where there is a step-parent or step-children involved. You fight over how to parent your child, what the right treatment options are, how much time is dedicated to caring for your child, and who is best equipped to take on the various challenges that come up. Sometimes you and your spouse will even argue about if the behavior of your child is a result of their mental health disorder, their stage in development, or if they are just being manipulative. There may or not be occasions where you tell your spouse to “Stop, this isn’t helping”, “Why won’t you hear what I am telling you?”, or “I will deal with it by myself”.
If a married couple can’t be on the same page regarding the numerous variables in caring for a child with a mental health disorder the results can be unbearable and irreparable. Resentment, depression, avoiding each other, and cutting the other out of the loop regarding your child are all very real and very hurtful possibilities. There is a struggle to balance your love and devotion to your spouse and marriage while also meeting the needs of your child. Some days you almost feel like you have to choose one or the other. It’s a feeling that completely sucks.
This doesn’t apply to just spouses, but to the child being cared for and other children in the home as well.You see professionals fail to mention to also make plans for your other children- counseling for the adjustment in home life, planning out time to spend one-on-one with them, and trying to explain what is “wrong” with their sibling. Their school work may suffer and it’s difficult for children and siblings to know how to answer the questions that people will always ask. There are little to no organizations geared to assisting a family from a holistic point- addressing the child with the disorder, the parents, and other siblings. Finding the right support group or other organization is extremely difficult because, again, you are trying to find something that meets the needs of a group of people.
Finding a case worker/manager to answer your questions or to try to guide you through the maze that is the mental health care system can be an issue. The lack of providers and other team members that are involved in managing your childs care is lacking across the nation. The Utah State Hospital has approximately 350 beds to serve the entire state population of just over 3 million people. That serves less than 1% of the population. At Utah State University the wait to see a mental health care professional is 4-6 weeks.
Yet, at the end of the day, you keep pushing on. You continually pray for good days, small victories, and achieving the balance your family needs. You pray your marriage will withstand the challenges and that your other children grow up with a deeper compassion for people. Outside of being able to cure your child or loved one, there is nothing you would change. You know deep down that you’re the only person who can care for them the way they need to be cared for. I will sacrifice and give, seek knowledge and guidance, and show love.
I don’t view my daughters disorders as something that makes her “beautiful”, “special”, or any of the other sentiments some people use to make their situation seem better or easier. I hate everything about her disorders. This isn’t because of the effect it has on me or my family but because it’s something that can’t be cured. She will always have to work 10 times harder than her peers to be successful. She will always have to cognitively deal with her emotions and manage her well-being. It’s a heavy load to carry and it’s my job to give her all the tools she needs while I can still make her take them.
Granted I have a strong faith base and fully acknowledge that God is helping us get through the ups and downs. Without Him, out life would surely be in shambles right now. Things aren’t perfect and on some days things aren’t even good. Despite this I know that, “Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” (Romans 5:1-5, ESV).
I take my role as a mother/caregiver seriously. Even though there were so many things nobody told me about mental illness, I have become more aware & educated in my goal to provide for my family as a WHOLE. To meet the needs of my daughter with a mental illness, to show my other children that they are equally important and loved, and to hold my marriage together to the best of my ability. And when I fail, which I do, I know I can “Let go, and let God”.