Life presents us all with challenges, but some are more predictable than others. Trying to find a good job, paying the bills and struggling to find one's way in this world are all things the majority of us have to address at some point. Far fewer people expect to have a loved one get seriously ill or to develop a mental condition that makes it necessary for them to step in and help manage that person's care on a daily basis. What happens when a close family member starts to have serious problems and needs almost constant monitoring and care? I'd rarely if ever thought about those things until I had no choice. A family member of mine began to experience severe bouts of depression and delusions, thrusting me into a new position in life: To a large degree, I became responsible for the day-to-day care of another adult. Here are a few things I have learned along the way. (I have chosen to refer to my loved one as "Charles" in this article, to protect his privacy. I've also changed a few other minor things for the same reason.)
When I got a phone call in the middle of the night that Charles was exhibiting some troubling behavior, it came as a complete surprise to me. Despite growing up around this person, I had no clue that Charles had been struggling with certain problems for years, or that he had been seeing a psychiatrist for at least a decade because of them. That initial phone call led to a monthlong stay by him at a mental institution, and things looked grim; Charles had been experiencing serious delusions and hallucinations. I wasn't sure what to do, but most of the mental health experts I was talking to thought that Charles would most likely end up in some form of controlled environment — a group home or mental hospital of some type.
Almost miraculously, as things were looking dire, Charles's mental state improved dramatically. Almost overnight he seemed like his old self, and it was the difference between night and day. Charles was released, and with the help of some newly prescribed medications and a live-in girlfriend who seemed eager and able to monitor him on a day-to-day basis, Charles returned home. I did too, since I lived more than 200 miles away at the time. Even though things seemed "okay" for the time being, I never really relaxed after that initial late-night call. It seemed like I could get another at any time. So I began to prepare as best I could, researching different strategies and resources that I might need to use in the future.
That's when I discovered just how confusing and difficult it could be to figure out what to do in such a situation. I never found a straightforward "road map" on how best to deal with the care of a mentally ill loved one. The nature of mental illness seems ill suited for a "one size fits all" approach anyway, but while there are resources available, figuring out the best course of action can be extremely challenging. Meeting with psychiatrists and other treatment specialists is important, but understanding what to do next can be bewildering at times, even with good guidance. It feels as if there are few safety nets, or that the ones available are full of holes. It can be a scary experience.
In the case of Charles, who was a high-functioning person most of the time, no one seemed to think that an assisted-living environment was the best option. As long as he was taking his medications and monitored on a daily basis, Charles seemed fine living at home. Things became complicated a couple of years after the hospitalization, when Charles's girlfriend died suddenly and unexpectedly. She had been instrumental in managing his day-to-day needs, and with her gone, I had no other choice but to step in and take over. It's a full-time job, and I'm not sure what would've happened if I'd been unable or unwilling to do so. There's a lot of juggling of responsibilities involved. I do all of the shopping, pay the bills, make sure Charles has books to read, and opportunities to visit with friends and family, while making sure a fairly complex schedule for medications is followed. I also have to do some of those things for myself. This has caused changes in my own relationships, as I rarely have time to drop everything and socialize the way I could in the past. I'm fortunate, because most of my close friends understand, and the people who don't I probably didn't need in my life anyway. I've had to learn to look at this situation as a challenge that's put things in perspective. I've had to prioritize time and figure out what's really important and what is not.
One of the terrible things about mental illness is that it's not predictable, and keeping abreast of new developments can be difficult. Something that might seem trivial to me could trigger a depressive episode in Charles, so I've found myself doing things I wouldn't consider otherwise — scurrying around town in the middle of the night to replace a favorite drinking glass that Charles has attached sentimental value to and somehow misplaced, for instance. Everything might be going along smoothly for a few weeks or months and then abruptly take a turn for the worse, so being able to change course quickly and address those problems becomes an important skill to have. Listening to Charles, and paying close attention to his mood, is of utmost importance.
One of the issues I imagine many people in a similar situation would struggle with is a sense of "unfairness," or of their loved one as being a burden to them. I can't fault anyone for struggling with feelings like that, as this kind of stuff can be frustrating and difficult. It could be easy for a lot of people to start feeling like their loved one was the problem, instead of a person with a problem. Having a support network of some sort — friends or other family members to reach out to who will listen, is really important. It's also vital to remember that you're not alone, and that many others are struggling with similar challenges. It's hard to do sometime, but anyone who's taking care of another adult has to make some time to take care of himself, too. Otherwise, the sacrifices a person will be forced to make could easily make people view the loved one as a burden or as less than human, and it's impossible to help someone else when your own well-being isn't being cared for.
There is also a social stigma attached to mental illness, and it's stupid, but it's there. I don't care much what other people think of me, but sometimes it gets irritating when I catch people talking about Charles like he's not even in the room. When I take him on routine errands sometimes, people who know he's had a few issues will often have weird, wide-eyed expressions. They'll ask me, "How's he doing?" to which I want to tell them, "Why don't you ask him yourself? He's standing right here." Usually, they're well-meaning and just uncomfortable or ignorant, but one of the biggest problems people with mental issues face is the dehumanizing way they're treated by a lot of folks. Some of those people who talk through Charles would probably be surprised to know he has a master's degree and is usually completely lucid and able to carry on an intelligent conversation.
One result of me seeing that kind of thing is that I'm a lot more aware of how our society tends to treat the mentally ill. We still tend to hide them away, or act as if people struggling with mental problems are somehow less human than the rest of us. When I used to see a homeless person talking to himself, it just made me uncomfortable, or I'd look at that person as an annoyance I wanted to avoid. Now I see them as someone our system failed, and as a person who probably has family or friends somewhere who love them. I don't have answers about what we should do to address these things, but as a society I think we need to try harder. It's too easy to fall through the cracks.
And viewing things on a larger scale, I'm fortunate. In fact, helping to care for Charles has brought me closer to him than I ever was before, and I have learned to be grateful for the family and friends I have. The love they've shown me has made a huge difference along the way.
One of the hardest things to come to terms with is just how common mental illness is, and how no one is immune from it. For the people who are caring for a loved one struggling with those issues, the road can be a rocky one, but it doesn't have to become a nightmare. The following are some links to resources I found helpful, and I hope they help others in the position I found myself in.
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This isn't a complete list of resources, but they are great places to start.